Benefit for Alise Williams Posted: Feb 15, 2009 03:37 PM CEDAR FALLS (KWWL) -- Alise Williams spent her fourth birthday in a Minnesota hospital Saturday.  Williams is undergoing chemotherapy and a bone marrow transplant.  Williams was born with 7 holes in her heart, and after her second open heart surgery, she was diagnosed with a genetic disorder called Fanconi Anemia.  The genetic disorder, seen approximately one in 600,000 people, causes an increased risk of cancer.  William's parents and her 9 year old brother have been living in the Ronald McDonald house, near the University of Minnesota. To help family through these treatments, friends gathered at the Cedar Falls AMVETS Sunday, holding a benefit for Alise Willimas+ "However, they still have their home here, still have bills.  Deb had to quit her job for a year.  Troy's taken a leave. Its been a hardship in that way also," said aunt Ladawn Hankins. The benefit included several raffles and a silent auction.  The donations were donated by friends, family, and people who didn't even know Alise. Online Producer: Jackie Manternach

You remember how your friend Sara Albert was on the show America's Next Top Model, well here is another Fanconi connection for the show. I said that Madeline Finnegan was the prettiest Fanconi patient ever. Now she'll be even more beautiful.

'ANTM' Judge Makes Dreams Come True

Tuesday, February 10, 2009

Though it may seem as if he's capable of crushing a model's aspirations on TV, Nigel Barker is actually out to fulfill wishes – for one lucky 13-year-old girl, that is.  The America's Next Top Model judge has worked with the Make-A-Wish Foundation to help out teenager Madeline Finnegan, who has held on to dreams of becoming a famous fashion model for some time.

Finnegan, who hails from the town of Huntsville, Alabama, was flown to New York recently to get the full top model treatment, from the hair to the make-up and of course, the wardrobe.  Afterwards, she accomplished her goal of being photographed by one of the industry's best – Nigel Barker.  She came home with a portfolio compiled by the America's Next Top Model personality, which she truly delighted in.

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When interviewed, Madeleine couldn't contain her excitement.  “It's pretty cool," she exclaimed.  “I'm not really nervous now, but I'm sure when the day comes I will be.”

This eighth-grader from Hampton Cove Middle School was fortunate enough to have her mother, Nancy Finnegan, write to the Make-A-Wish Foundation.  Apparently, Madeline and her older brother Blaise both have a rare blood disorder known as Fanconi anemia.  It could cause bone marrow failure, and often leads to leukemia.  While their health is stable for now, they might still need bone marrow transplants in the future.

Last summer, their mother decided to do something extraordinary and make Madeline's dream a reality.  Eventually, it paid off and the whole family was invited to stay in New York for four days to see how Madeline works it in front of the America's Next Top Model judge.  But in the end, it was all about having fun.

“My friends are so excited.  They've been asking me to take tons of pictures, which I will,” she said.

America's Next Top Model is set to air its 12th season later this month on the CW.  The 13 contestants have been revealed, with Tyra Banks, J. Alexander, Paulina Porizkova and Nigel Barker returning as judges.


-Maria Gonzalez, BuddyTV Staff Columnist
Source: CW, The Huntsville Times
(Image Courtesy of the CW)

How terrible/crazy is it to see these both in the newspaper on the same day. Actually, the same thing happened before. I will look back and find that.

Unfortunately, we know that whole ventilator/University of Minnesota thing. Let's hope for a good outcome.

Home builders create a special place for Dylan
By HANK DEWALD
HERALD STAFF WRITER

GASTON – When Dylan Moore and his family return from Minnesota where he is receiving treatments for the rare disease, Fanconi anemia, they are in for a big surprise thanks to a few special people and the Roanoke Valley Home Builders Association.

Since the progression of his disease has severely weakened his immune system, Dylan, who has always had to share a bedroom, will need his own separate room and modifications made throughout the home, said Joey Elias, president of the builders group. The main problem was the Moore’s home just wasn’t big enough to create a separate special area for Dylan.

There was, however, a nice carport attached to the brick home. It doesn’t take much imagination to guess what the group of builders decided to do with that carport, but most would think one simple bedroom. What the group has done is transform the carport into a bedroom suite, complete with its own bathroom and closets. The suite is attached to Dylan’s parents’ bedroom through their bathroom, with a separate laundry area and hallway entrance that now exits into a new bricked-in carport.

Elias and several others were busy putting the finishing touches on the construction Friday, installing trim work and getting everything ready to paint, a chore planned by the Moore’s family and friends. “This wasn’t all our idea,” Elias quickly pointed out. “The people behind all this have done a lot more and they really don’t want to be mentioned. It’s just that we, as a group, try to do something like this, at least one project each year, so when they contacted us, we jumped right in.”

When he says “jumped right in,” he wasn’t kidding. The group of RVHBA members and friends started the work on the Moore’s house the week before Christmas. What the group of builders has accomplished is amazing. “We’ve got people who are involved in home building from every trade, so I feel badly that we are here now, because we just got here,” Elias said of the group working on Friday. “All of the others did most of the work.”

Elias said Mike Copeland did the framing, Rightmeyer Equipment Rentals provided all the landscaping and heavy equipment used and most of the concrete work. Lloyd’s Decorating Center donated the paint supplies and will help with the flooring. Weaver Insulation donated all of the insulation and Bill Freeman Roofing donated all the labor to seamlessly blend the new roof in with the existing one. “Once again, I feel badly because I know I’m leaving out so many people who have been involved in Project Dylan,” Elias said.

There is one big push going on now to finish the project because the Moores are expected to return home by the end of January. Elias and the guys working Friday were a whirlwind of activity. Once they are out of the way, the final painting will start and the flooring will be installed. The finishing touches will be the landscaping, which John Pittman Landscaping will handle.

What the Moores see when they get home will surely amaze them.

With Dylan’s special needs, this group of builders has made life much easier for the Moores. Elias said it is just another example of how caring people are here in the Valley. “When we heard about the family in need, we all just came together and got it done. The one’s who called us are the one’s that deserve the credit, but that’s just the kind of people they are,” said Elias.



Moore family requests prayers as Dylan worsens
By DELLA BATTS
Daily HERALD STAFF WRITER


FAIRVIEW, MINN. — The family of Dylan Moore is asking for prayers as a new mass was found behind his heart this week and he is now in intensive care, once more on a ventilator.

The 8-year-old child was reportedly scheduled to leave the University of Minnesota Children’s Hospital in seven days, and the family had been counting down until the time when they could all be reunited.

His mom, Betsy, on the family Web site, caringbridge.org/visit/dylanmoore, said, “I can’t believe that in seven more days, we should be home. Here we sit in ICU praying harder than we ever have before that we will all eventually come home well.”

Moore was born with Fanconi anemia, a rare genetic disease, distinguished by short stature, skeletal anomalies, increased incidence of solid tumors and leukemias, bone marrow failure and cellular sensitivity to DNA damaging agents such as mitomycin C. He recently underwent a bone marrow transplant.

Moore’s most recent tumor effected his heart and lungs. He is on chemotherapy now, in hopes of shrinking it quickly, but according to Betsy, Fanconi patients don’t fare well with chemotherapy. “We pray that he will not have to have any more radiation because FA patients do not tolerate it well. If the mass hasn’t decreased he will have to have more treatments to shrink the mass until the treatments, the T-cells, or Dylan’s immune system can fight this.”

Moore’s Web site has daily updates on his condition and allows messages to be sent to him and the family. The family said to please continue to send messages as they mean so much to her son. “Thank you all for all of the prayers and support. It means so much to us. Dylan wanted to hear all of his messages tonight so I read him every one. Your support has really helped. Keep the messages coming. We love to hear from all of you.”

Jasper’s brave fight

04/Nov/2008

Jasper Miles and mum Brooke.

JASPER Miles is one of only four children in WA with a rare life-threatening disease, but his mum Brooke has hope a cure will be found so he can outlive her.

Diagnosed with fanconi anaemia in February last year, the five-year-old has blood tests every three months and bone marrow tests every year to make sure his condition has not worsened.

Jasper has a high risk of developing head and neck cancer, leukaemia and bone marrow failure and has a life expectancy of 29.

Brooke said she and husband Paul had to be positive about the future and “not be reactive but proactive”. Having an early diagnosis helped.

She said the doctors could not explain Jasper’s abnormalities such as his small size when he was born and after years of blood tests and referrals from pediatricians to geneticists since he was six months old, the rare diagnosis was made.

“We are actively looking for a bone marrow match and are on the national registry,” she said.

“We feel it gives us more control.

“He is healthy at the moment and we don’t really need to worry about things too much.

“If you’re not positive then what else have you got?”

Brooke said Jasper, who only had a 25 per cent chance of being born with fanconi anaemia, had some idea he had the disease.

“We told him he has special bugs and got half from mummy and half from daddy,” she said.

“He says ‘I don’t want my bugs’ and ‘why do I have to have them?’.

“He asks a lot of questions and we try keep answers as simple as possible.”

Brooke, Paul and Jasper have met other families dealing with fanconi anaemia and Brooke said they offered each other much- needed support.

She said in the past year alone, with medical research and advancements, the life expectancy had increased from 21 to 29.

“Medicine moves foward and you have to have hope,” she said.

Brooke is fundraising to raise money for further research into the disease. She sells key chains and other items and said she wanted to increase public awareness about the disease.

“There is something special about the FA kids and we have to do what we can to find a cure, because if we don’t no one else will,” she said.

“As much as it is awful and wouldn’t wish it on anyone else, we wouldn’t change him for anything. You can take it with doom and gloom and look at it the negative way, but that’s not going to get you anywhere.”

To donate, visit www.fanconi. org.au. And check out Jasper’s website at www.jaspermiles.blogspot. com. 

I know this is totally shallow of me to say (especially when we are talking about such a serious disease), but Blaise and Madeline are the most handsome looking FA kids I have ever seen. They don't appear to have the "tell-tale" close set eyes. They seemed to have been spared the severe birth defects. 

I wonder where Hampton Cove is.

Fanconi Anemia – Bone Marrow Drive

October 21, 2008

Scott and Nancy Finnegan learned last year that both their 17-year-old son, Blaise, and 13-year-old daughter, Madeline, have Fanconi anemia. They will eventually need bone marrow transplants to survive.
Madeline and Blaise also have aplastic anemia, meaning they have lost some bone marrow, and is being treated by a Minneapolis doctor who specializes in Fanconi anemia.

On October 31st, a bone marrow/blood drive sponsored by Life South will be held at Hampton Cove Middle School in hopes of finding a donor for Blaise and Madeline. Siblings are usually the best bone marrow donors, but the Finnegans’ youngest child, 8-year-old Trinity, is not a match.

The ordeal began in March 2007, when Madeline, now in her final year at Hampton Cove Middle School, went to the doctor because of stomach pain and vomiting. Her pediatrician suspected appendicitis, but tests showed problems with her red blood cells, white blood cells and platelets.

Eventually, Madeline developed sores in her mouth and throat and was sent to St. Jude for a bone marrow biopsy; she was diagnosed with Fanconi anemia a few days later.

Fanconi anemia is a genetic blood disorder that causes bone marrow failure and often leads to acute myelogenous leukemia. Even after bone marrow transplants, Fanconi patients have an increased risk of developing cancer and other serious health problems.

Blaise, a Huntsville High senior who plays bass guitar and golf, was diagnosed while being tested for a bone marrow match for his sister. Neither child appears sick, but must be careful to observe signs related to Fanconi anemia.

Madeline and Blaise will eventually need a match if their bone marrow continues to fail. Nancy is Mexican, so there may be an increased chance to find a match within the Hispanic ethnicity; but we encourage all to support the effort in finding a positive bone marrow match.

We are asking for your support at the bone marrow/blood drive on October 31st at Hampton Cove Middle School from 7a.m.-7 p.m. Bone marrow testing is a painless swab of the check with a Q-Tip.

For more information, please contact
Chanda W. Davis at 256-755-4600 or Stacy Copeland at 256-428-8380

While I think it is great that James Christopher got his wish - he deserves it - and it reminded me of you and President Clinton, I have trouble understanding how these folks can be so enamored of a President who doesn't support measures that are necessary to save James Christopher's life - namely, federal support for embryonic stem cell research.

The bone marrow drives are great but they are only a small part of the total picture of what's needed to save James Christopher's life.

What do you do once you identify that donor.

As Dr. Wagner points out, the life saving advances in stem cell transplantation for FA and other diseases have been made possible because of research on embryonic stem cells. I guess it is convenient for everyone in the article to overlook this truth. Or they understand that completely and are what we call up here in the North: "hypocrites."

Along with President Bush's very public opposition, Rep. Alexander, who appears to have coordinated this visit, votes against expanding embryonic stem cell research whenever it comes up in the House of Representatives.

Unfortunately prayer and the President's confidence aren't going to save James Christopher - better tissue stem cell and umbilical cord transplant protocols and therapies will.

My "presidential wish" is that we elect a leader who will take the hard but necessary steps to save James Christopher's life and other kids like him.



Monroe boy gets presidential wish
By Greg Hilburn • ghilburn@thenewsstar.com 
October 20, 2008

Young James Christopher Allums is going to have a tough time topping Monday’s field trip, and he’s got the T-shirt to prove it.

Allums, 11, who’s fighting a rare, possibly terminal bone disease called Fanconi anemia, met President Bush in Alexandria, then toured Air Force One with his parents, Ellen and Chris Allums.

“I was nervous and excited — both,” said James Christopher, who said he has been a fan of Bush since he was 4 and his parents, freelance florists and decorators, were among those called upon to provide flowers for Bush’s first inauguration.

Fifth District U.S. Rep. Rodney Alexander, R-Quitman, arranged the meeting, and Alexander and Bush began waving to James Christopher soon after they stepped off Air Force One at Alexandria International Airport.

“We were just beaming, and tears were pouring down my face,” Ellen said.

Bush hugged all of the Allumses and put his hands on James Christopher’s shoulders.

“He said, ‘You’re a strong young man, and I think you’ll be just fine,” the boy said.

Allums’ parents have dedicated the past few years to searching for a bone-marrow match for their son. Without one, Chris said, his son’s disease is fatal.

The Allums have signed up more than 10,000 people to the bone marrow register — at about $55 each — during multiple marrow drives. Their efforts saved five lives last year, but so far the search for a match for their own son has been in vain.

“I talked to the president about trying to raise more money (to fund marrow drives), and he turned to Congressman Alexander and asked him to get more information about it and get it to his desk,” Ellen said. “It was an unbelievable blessing.”

The Allums, who home-school their son to keep his exposure to illness at a minimum, also prayed with Bush at the airport.

“We asked him if we could pray for him, and he said yes,” Chris said. “He was so down to earth. He looked into your eyes, and you knew that he was interested.”

Alexander said his ability to arrange such meetings is the best perk of his position.

“It was very touching,” the congressman said. “It makes all of the heartaches and politics of the office worthwhile.”

After the Allums left the airport to each lunch, they were called back by the White House staff for a tour of Air Force One.

“The cockpit was unbelievable,” James Christopher said. “We got to sit at the president’s desk and see his bedrooms and bathroom. There were also a bunch of TVs.”

As they were leaving, the staff presented James Christopher with an Air Force One T-shirt “and a bag of other stuff, too,” he said. “It was great.”

Family prays for donor match

2 kids have rare blood disorder

By MICHELE MANDEL

Monday, September 22, 2008

HAMILTON -- Lucas Blake cradles his baby brother in his arms and the 7-year-old gazes at him with dark eyes full of love.

They are more than brothers; they are soldiers in arms. Baby Owen was supposed to be his saviour. Instead, he has joined Lucas in the same struggle to survive.

And as their father watches his two ill sons, all that keeps ringing in his ears are Lucas' words when he found out, "But Daddy, who's going to help me now?"

Lucas came home from his Grade 1 class last January complaining he wasn't feeling well. A bundle of energy who usually loves horsing around with his older brother Noah, he was suddenly overcome by fatigue and running a fever. His parents, Manuela and Keswick, initially assumed it was just the flu. It was only when they told their family doctor that they'd noticed Lucas had been bruising recently that something more serious was suspected.

After weeks of tests, the Blakes were given the devastating news: Lucas has Fanconi anemia, an exceedingly rare, genetic blood disorder. He needs blood transfusions to keep him alive, but his only hope for a cure is a bone marrow transplant.

Through their tears, his parents were suddenly seized by hope. In the midst of trying to find out what was wrong with their son, Manuela, 41, had discovered she was pregnant.

"We only planned on having two children," says Keswick, 37, with a sad smile at his beautiful family sitting around the kitchen table. "When we found out she was pregnant, we thought for sure it was a miracle."

Their miracle baby had to be the answer. Lucas' big brother wasn't a bone marrow match and neither were his parents. The new life growing in Manuela's womb became the focus of all their hopes. "I just thought God gave me him for a reason," she says. "He was going to save Lucas."

Owen was born in June but tests eventually showed that despite their months of prayers he could not be a donor for his brother. "To get that news," Manuela confides softly, "it tests your faith."

But there was more. Several weeks ago, they were called into a meeting at McMaster University hospital for news even more crushing -- not only can Owen not help his brother, but he needs his own saviour -- he has Fanconi anemia as well. Now the Blakes face the Herculean struggle of finding not just one bone marrow donor, but two to save their boys.

ETHNIC BACKGROUNDS
What makes their quest even more difficult is their ethnic backgrounds: Keswick was born in Jamaica and Manuela in Portugal. The boys' best chance of finding donors is within their own ethnic group, but no one in their extended families is a match and about 75% of the people on Canada's one match stem cell and marrow registry are Caucasian.

Shy and private, it is obvious that speaking about their family's ordeal is excruciating for both parents, yet they have no other option but to come forward to appeal to readers, especially those from their communities, to register as potential donors at onematch.ca.

"We feel so helpless," Manuela says, as she rocks the baby to sleep. "We're leaving our kids in someone else's hands and begging, 'Please fix them.' We're pleading to the public because we don't know what else we can do."

Joining the donor registry is as simple as requesting a kit from OneMatch and sending back a few swabs of the inside of your cheeks. That DNA information is then stored in their database for potential patients around the world.

If a match is made, the transplant is usually much simpler than it used to be when bone marrow was drawn from the donor's hip. With the newer peripheral blood stem cell transplant, a drug stimulates a donor's bone marrow to release stem cells into their bloodstream. Those cells are then harvested from their blood and transfused into the patient.

Since the search for Lucas began in March, no match has been found. "We're pleading with people of different ethnic backgrounds to find it in their hearts and get tested," Keswick says. "If it doesn't help our kids, it might help other kids out there.

CAN'T GO TO SCHOOL
"Just look at those boys and help them," he begs. "It's hard to watch them slip through your hands."

The life expectancy for those with Fanconi anemia is just 22 years. Lucas' health is already failing and because his immune system is so weak and he can't risk infections, he can no longer go to school or play with a lot of other kids. Visitors to the house are asked to wear a mask and when Lucas does venture outside, he puts on one of his disposable Mickey Mouse masks as well.

"Kids make fun of him," his mom says.

"He gets really depressed about it," Keswick adds. "He's always asking, 'How long is this going to take?' "

Owen is too young to understand what he is facing. But Lucas hears it all -- how he might die, how his parents are terrified. He watches them fight back their tears in front of a stranger and soon the little boy can't help crying as well.

His mother quickly draws him to her, hugging him close with one arm, cradling his baby brother with the other. "This is my soldier boy," Manuela whispers to him. "He's my strong boy. We're going to fix it, aren't we, baby? Yup, we're going to fix it."

Please help them try.

EVELYN HOWELL/HERALD STAFF WRITER

ROANOKE RAPIDS - For young Dylan Moore, the wait for a bone marrow transplant is almost over.

His mom, Betsy Moore, gave him the good news on Friday that a matching donor has been found.

The 6-year-old has Fanconi anemia - a rare blood disorder that leads to bone marrow failure.

In a few weeks, Dylan and his family will travel to Minneapolis where he will undergo a delicate bone marrow transplant at Fairview University Children's Hospital.

“There are only about 500 cases in this country and not many doctors have seen this case, so we had to choose the doctor who had the most experience in treating this disease,” said Moore.

Two years ago, Dylan was diagnosed with the rare disease and since then, his condition has been slowly deteriorating.

Last year, he could not attend school because his immune system was too low - meaning his body could not fight off germs and potential infections.

He was home schooled by means of an online system.

”He was forced into isolation when his blood count fell so low,” said Lenn Roberson, Dylan's aunt, and one of many champions Dylan has in his life.

“I try to be there for him, but I guess the hardest thing for him is to not be able to go to school and see his friends.”

Because the procedure is such a high risk, Moore said that her family waited as long as they could to go without choosing the surgery.

With his bone marrow functioning at only 30 percent, the family's options are now limited.

“We didn't want to go (with the procedure) unless we had to and at this point, we don't have a choice,” Moore said.

Even after the transplant Dylan will still be facing some difficulties.

“Dylan realizes he has a challenge ahead of him but he is a real trooper,” said Moore adding, that she is nervous, scared, excited and hopeful about her son's outcome.

This Sunday, the family will host a going away party for Dylan, who turns seven on Sept. 18, where friends and supporters are invited to come and join in on the celebration at the Union Hall on Roanoke Avenue from 3 p.m. to 7 p.m. Family members request no gifts, only to stop by for a few minutes.

“We appreciate all the support of our friends, family and the community,” said Moore.

Essay #1 "When Bad Things Happen To Good People"

Freshman Again...: Essay #1 "When Bad Things Happen To Good People"

Wednesday, September 10, 2008

Essay #1 "When Bad Things Happen To Good People"

When Bad Things Happen To Good People

About six years ago, my cousin, Jenny Shields, died of a very “rare, inherited bone marrow failure disease” called Fanconi Anemia. Jenny is 1 of only 3,000 known cases in the entire world today. She was only twelve years old when she died and I was only thirteen. When Jenny was born she was not much bigger than a Barbie doll in size and they never could figure out what was wrong with her. Jenny was diagnosed at the age of ten and was on a waiting list for two years for a bone marrow donor. Time meant everything.
Jenny’s bone marrow was supposed to do so much more than it was. It was only producing five percent of the blood cells it need to and if she did not get a bone marrow transplant soon then she would run out of time. The doctors told her that her white counts were so low that even if she contracted something as little as an ear infection, it could be critical. The process that Jenny and her parents had to go through was so intense and intricate that I could not see how anyone could go through such a thing. The family tried a number of procedures, but the bone marrow transplant was the only hope left. Despite that the disease was robbing her of life’s “sustaining blood cells”, she still seemed as happy as ever.

Jenny always looked toward the better side and had hope for her condition. Her joy and great presence made it so much easier for those who surrounded her in this sad time. She could no longer go to school, doctors were telling her they could not help her, and she did not even know if she had a fighting chance, but somehow she stayed strong. Jenny wanted to be a veterinarian and saw herself with a future. She wanted to be a normal child and grow up. She had the mindset that everything would be okay and some how she made everyone believe her.

There was a group of older ladies in the community around Louisville, Kentucky, where Jenny was from. The women each wrote a prayer on a small quilt square. They all pitched in and made her one big quilt with each of their quilt squares. Jenny loved the prayer quilt with all her heart. It was beautiful and full of the nicest prayers I had ever heard. Once, when Jenny was asleep my aunt, Jo Ann, took it from the bed and washed it. When Jenny woke up, she found out and was heartbroken. Jenny thought that because my aunt washed the quilt then all the prayers were washed away along with it. Jenny usually was able to hide hear fear in the inside, but when it came down to it she was even more scared than everyone else.
Since most doctors knew very little about her disease, she was forced to an out of state specialist for her treatment. In the whole United States, there were only two doctors who specialized in Fanconi Anemia and could give her the help she needed. One was in Memphis, TN at St. Jude and the other was in Minnesota. Jenny and the family traveled to Minnesota to meet with the doctor who specialized in her case. A doctor who knew a great deal about Fanconi Anemia was a wish come true.

The first procedure they tried was having my aunt get pregnant so they could use the baby’s stem cells from its umbilical cord to cure her. My aunt was not capable of having kids anymore; therefore, they had to artificially inseminate her other daughter’s egg, along with my uncle’s sperms, into my aunt. Every time they went through this and the baby’s stem cells did not match they had to terminate. My aunt, Jo Ann, went through this procedure five different times. One of the times she was pregnant with quadruplets, but none of them matched. The last time they tried, the baby finally matched and everyone was so happy, but Jo Ann ended up having a miscarriage. Money was becoming a very big issue and they could not afford to keep doing this emotionally or financially. Can you imagine how devastating that must be? To be so close to saving your own daughter and being denied happiness again?

After they had lost all hope on that course of action, everyone was hoping for a miracle. Jenny was getting very sick and needed some type of cure soon. They never found a perfect match for a bone marrow donor, but they did find someone who was as close as they were going to get. They set the time and date for the bone marrow transplant for the very next day. Finally, more hope at last.

I remember flying in and going to see how Jenny was. The hospital was so white and huge. It was crowded, noisy, smelly, and full of hurt and sadness. How would anyone be happy spending their last days in that environment? Jenny was already in surgery when we got there. It all happened so quickly. We received the phone call the night before and the next night we were there. No one had any idea what to expect. The next day everyone got to see her and find out how she was. She seemed well, even great for someone who had surgery just hours before. I only got to see her for a minute, but I still could never forget it. I was so relieved that she was okay. I could not bear to loose not only my cousin, but a great friend.

The whole day everyone kept their hopes up that everything would work out successfully. We had to wait and see if her body would accept the new bone marrow and it seemed as if it was going fantastically. That night it went bad. She hit rock bottom. Jenny all of the sudden became dreadfully sick. I was back at the hotel. I remember hearing the phone ring. Immediately, we knew something was wrong. My grandma called and said it did not look good. We kept on praying. Then, the phone call came. That one phone call I would never wish upon anyone. Jenny was dead and it drastically changed everyone’s life at in an instant. Together my mom and I cried. It could have been for minutes, maybe even hours. I had no idea what to do, or how to react. All I knew was it had to be a lie. It had to be a joke, an awfully mean joke, but it was not. All hope was gone forever. Jenny, my cousin, my friend was gone forever.

The next week was Jenny’s funeral. My mom, my sister, and I flew to Kentucky, where Jenny lived, and my dad drove from Arkansas to meet us there. Once we got there we went to stay with my grandma and the mood around us was indescribable. It was silent and sad. I was only thirteen and did not know if I did not know how to accept that she was gone for the better and that God wanted her to live a better life there in heaven. Should I be angry with him? When someone so young, so close, and so wonderful is taken away from you, it is hard to know how to react.

The day before the visitation, we went to my great grandma’s house to see everyone and see how everyone was doing. We ate dinner and the whole time everyone looked so depressed. The family talked about how Calvin and Jo Ann, Jenny’s parents, were doing and it seemed like they were definitely not good. Jo Ann could hardly speak to anyone and Calvin would not speak at all. They both were in a major depression and the next day, when I saw them at the visitation, I immediately began to cry. Calvin hugged me. He knew how close Jenny and I were and we were almost the same age. I was surprised he even came up to me. I believe it was the saddest time of my life.

Before the funeral the next day, they played a slideshow of Jenny and there was not one dry eye in the funeral home. This big vintage, distasteful funeral home was already sad looking enough. The tears and closed casket did not help matters. The people were all so sad and I knew exactly where they were coming from; I was sad too.

As everyone drove to the grave yard that stormy sad day, I could not think of anything else except what had happened. Jenny was such an amazing young girl. She was nice to everyone and she did not ask for much. All she wished for was to be a normal child. Everyone gathered in the cemetery to watch her casket be carried to the gravesite. All the people there came around and put a flower on the casket. As tears ran down everyone’s faces, the preacher said a prayer and a few nice things about Jenny. We all watched as the casket was lowered into the ground. At that time, I knew Jenny was watching down from heaven and that she was in a better place.

The loss of my cousin, Jenny, hurt her friends, family, and even people who barely knew her. She was the girl who would have made a great impact on the world. Still now, I think of Jenny every single day and I wish there could have been a way for me to make a difference, to save her, or at least say goodbye. Why do bad things have to happen to good people?

Kevin McQueen, right, and Bill McCorey hold the Fanconia Anemia Research Fund flag signed by campers at Camp Sunchine, a summer camp for kids with Fanconia Anemia. - Photo courtesy of the McQueen family Kevin McQueen conquers Mt. Rainier for Fanconi Anemia By Sara Page, MidlothianExchange.com Sep 08, 2008 sports@midlothianexchange.com If you ask him, Kevin McQueen will tell you he is not a mountaineer. Growing up, he spent time in the boy scouts and eagle scouts and he enjoys time outside camping with his family, but climbing mountains had not been a major part of his life. That is until this August, when - with his family in his heart and raising money for his son’s illness on his mind - he climbed to the summit of 14,410-foot Mount Rainier in Washington. McQueen, who keeps in pretty good shape to begin with, started training for the climb about six months ago when he was asked by friend Bill McCorey to make the trek. McCorey had made a summit attempt a year prior which was cut short by a 15-20 foot fall down a crevasse about 12,000 feet up. McCorey wanted to make the climb again and take McQueen with him and make the trek a fundraiser for the Fanconi Anemia Research Fund. Training for the trip proved no easy task though. “Mostly it was a strict diet of Little Debbie snack foods,” McQueen joked. “I met with a personal trainer, a guy from Endorphin Fitness and a neighbor of mine Mike Harlow and kind of laid out what I wanted to do … He tested me on where I was for the training program basically so I could increase my ability to process oxygen,” he said seriously. The program consisted of interval training, which got him running for 40 minutes at a time just below his anaerobic threshold. He spent time backpacking almost every Sunday on the Appalachian Trail to get ready for the vertical climb. By the time he reached Mount Rainier, McQueen says he was physically ready. The Climb Mount Rainier, by virtue of its height, sports snow and ice year round, so it’s not your typical summer hike. Snowfields start around 5,000 feet and from there up, climbing is done with crampons, ice picks, axes and ropes. All of the climbers in a group are roped together so that if a fall occurs in steeper or crevasse-heavy terrain, a rescue is made more feasible simply by the other climbers digging in. In fact, his rope team is what saved McCorey a year ago. “This [was] the first time I’ve had crampons and ice axes and ropes and climbing up glaciers and all that … I’ve always been intrigued by that but it wasn’t something that was in my foreseeable future,” McQueen admitted. The group of four from the metro Richmond area – McQueen, McCorey, Bob Cournoyer, and Todd Stormes – flew into Seattle, Wash., Aug. 13 and drove two hours to Ashbury, Wash., to the base of the mountain to meet up with guides from Rainier Mountaineering, Inc., and the rest of their climbing companions the following day. Friday was spent getting gear and going through orientation on the gear and the mountain. Saturday, Aug. 16, the group hiked to the snow fields and trained with the ice gear and learned how to self-arrest with the ice ax in case of a fall. On Sunday, the group started their climb with six hours of hiking up to Camp Muir. The hike takes climbers through trails and paths into snow fields and from an altitude of 5,000 feet up to 10,000 feet. The group met with their guides about the next day’s climb, had a quick dinner of freeze dried food and went to bed … at 6 p.m. “You don’t really sleep,” McQueen said. “You try to sleep … [but] you’re all geared up and it’s still light out … You stay in this plywood box that’s maybe a little bigger than [a standard size room]. It has a floor and two shelves that you sleep on and there are mice. It’s kind of cool.” The group was awakened at 11:30 p.m. with a departure time of 12:30 Monday morning with a goal of making the summit and then hiking back down the mountain in one day. Climbers rely on headlamps and the snow for light as they make their way from Cathedral Gap to the flats at 11,200 feet where they rest before attempting Disappointment Cleaver, a sheer cliff that is mostly rocks at this time of year. From there it’s nearly straight up to the top. “[Washington] had a lot of snow this year, which was nice because when Bill went last year, because the snow had melted so much, [they couldn’t do] the Knoll route, which is the route we took, so what happened was he had to go out on what is called the Emmons Glacier. It’s a lot bigger glacier with more crevasses. [This year] because they had so much snow, the Knoll route was still open, which is pretty rare, so it was a lot easier for us,” McQueen said. “What’s weird about it is that it’s a volcano so all the other mountains around there are about 7,000 feet. [Mount] Rainier is 14,000 feet so it’s just so much higher than anything else,” he said about being at the summit. “I’ve been on tall mountains before and you see valleys and there are mountains that are roughly the same size as you but this is so much bigger than anything else. When you’re up there … I felt exposed. I felt like I was going to fall off. It was just disorienting.” Mount Rainier stands in all its 14,410 foot glory in Washington. - Photo courtesy of the McQueen family The group had only one scary moment, which happened as they descended. A weather system coming through the area produced a major thunderstorm. No one was hurt or hit by lightning though. The climb, so far has raised approximately $50,000 with more coming in. All of the money will go to support the Fanconi Anemia Research Fund. Fanconi Anemia McQueen and his wife Lorraine received the news that their son Sean had Fanconi Anemia nearly nine years ago. He was born early at just a little over three pounds and had a horseshoe-shaped kidney and a bent thumb. Doctors tested Sean for a number of things but it wasn’t until he went to Dr. Joann Bodurtha at VCU that they got the final diagnosis. Though nothing appeared wrong, Sean’s small stature, his kidney, thumb and a café au lait spot that had appeared on his lower lip nagged at the geneticist, who finally tested for Fanconi Anemia. Fanconi Anemia is an incredibly rare – only about 500 kids in the U.S. currently carry the disorder – genetic disorder. With 13 known forms of the disorder identified, both parents must carry the same type of mutation. It is also a recessive disorder so even when both parents carry the mutation there is still only a 25-percent chance of the child inheriting the gene. When a person is exposed to cancer causing agents, those agents try to replicate DNA and thereby affect cells when they go through their natural dividing process. The human body has a series of proteins that are activated that check through the cells to make sure they haven’t been incorrectly processed by cancer agents. In kids with FA, the recipe that their body uses to make the proteins either makes the protein incorrectly or tells the protein to stop its job too soon. Bone marrow cells are the ones most often effected by the disorder and so the kids with FA have a higher risk of developing leukemia, a type of cancer that causes the white blood cells in the body to overproduce and start eating at healthy red blood cells, or their bone marrow cells simply die off. Bone marrow is responsible for making blood. Eventually most kids with FA require a bone marrow transplant, which produces a whole new set of problems. “The normal treatment that you or I would get [during a bone marrow transplant] would kill these kids because they basically use chemo[therapy] to kill all your bone marrow and then put new bone marrow in,” McQueen explained. “The drugs they give [during a bone marrow transplant], FA kids just can’t tolerate them, so it’s a much riskier procedure.” “When we first got involved [with the FA Research Fund], the summer after he was diagnosed, the survival rate for bone marrow transplants were in the 18 to 20 percent range, so it was really your last resort.” Research has brought bone marrow transplant survival rates up to around 100-percent for a sibling match and between 80- and 90-percent for non-relation matches. Sean’s sister Kelsey is not a match for him. Only four centers around the country do bone marrow transplants for FA kids but with survival rates going up, research is now focused on how the disorder affects people later in life along with how and why the disorder develops in the first place and how to treat it and keep it from occurring. How to get involved It is not too late to donate to the fundraising effort from the climb or to golf or participate in a wine tasting dinner to benefit FA later this year. Links are below. As for future mountaineering adventure, McQueen says he’s still letting this experience settle in though ideas for a possible climb in 2010 have been tossed around. “It was very emotional for me,” McQueen said of making it to the summit of Mount Rainier. “It was such a thrill to make it on a personal level, I’d just come from FA camp and we got all the kids to sign a flag and I knew Lorraine was nervous … I had a whole set of families and I was leading the charge … It was overwhelming. “It’s hard to convey our level of appreciation,” he added. “We have a great group of friends that have helped us with this and the community and my company … It’s just hard to say enough thanks.” Donate to the Mount Rainier climbing effort, play golf, have dinner or see more photos from the climb.

Praying for a miracle

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Lucas and baby Owen suffer from a rare blood disorder. Their parents are hoping for an equally rare match from a bone marrow donor needed to save their lives.

September 03, 2008

NICOLE MACINTYRE
THE HAMILTON SPECTATOR
(Sep 3, 2008)
When Lucas Blake was diagnosed with a rare blood disorder last winter, his mother trusted her faith that the miracle donor who could save his life was growing in her womb.

For months, Manuela and her husband, Keswick, prayed that the baby, unexpected but welcome, was a stem cell match for their seven-year-old son.

"I was convinced this was a godsend," says Manuela, her eyes filling with tears. "We thought, This is going to save him.'"

Baby Owen arrived in June. A month later, doctors delivered the devastating news: he also carries the disease and will need his own marrow transplant. Now the Blakes are appealing to the community to help them find another miracle.

"I don't like to ask for help. I'm a very proud person, but this is my children," says Manuela at the dining table of her North End home.

Lucas and Owen suffer from Fanconi anemia, a genetic condition that affects just a few thousand people worldwide. It's passed on from parents who each carry the recessive gene. There's a 25 per cent chance a child will have Fanconi -- the Blake's oldest son, Noah, 11, is healthy.

Fanconi destroys the body's ability to reproduce blood cells. Often diagnosed in early childhood, the disease weakens the immune system and ultimately leads to death. The only cure is a bone marrow transplant.

With Lucas's health declining and Owen's future uncertain, the Blakes are desperate to find a donor match. "It's what we pray for every night," Manuela says.

Noah, the best chance for a match, was already rejected. Friends and family who volunteered for testing also failed.

The family is hoping to find a donor with the Red Cross's stem cell and marrow network, though their odds may be lowered by the Blake children's ethnicity. A donor match is more likely among the same race. In the Blake's case, Keswick is Jamaican and Manuela is Portuguese.

A match will be more difficult to find, but not impossible, says Cindy Graham of the Red Cross.

Nearly 75 per cent of people registered on the donor list are caucasian. The agency is looking for donors of different races to increase the chances for patients like the Blakes.

Just seven months ago, the Blakes had no hint that Lucas was even sick. Though many children with Fanconi are born with defects, Lucas seemed perfectly healthy.

Then in January, he developed a high fever. His parents thought Lucas had simply caught a bug. But the fever persisted, pushing the Blakes back to their doctor. At the appointment, Manuela, pregnant with their third child, mentioned Lucas was prone to bruising -- an ailment she had always attributed to an active childhood.

The doctor ordered blood tests. Two days later, he called and told the Blakes to take Lucas to the hospital immediately. Manuela and Keswick were relieved when tests ruled out leukemia. Their solace was shortlived. By March, specialists confirmed Lucas had Fanconi.

But Manuela quickly found hope for her son in her pregnancy. If the infant was a match, its umbilical cord blood could help Lucas. Prenatal tests could check if the baby also had Fanconi, but the procedure carried a risk of miscarriage. Manuela declined, not wanting to take any chances.

After Owen was diagnosed, Manuela and Keswick called a family meeting to tell the children. Lucas hugged his father, asking, "Who's going to help me now?"

"That was my breaking point," Keswick says.

Until a donor is found, Lucas will receive regular blood transfusions. The disease has weakened his immune system, making it too dangerous for him to return to school.

From behind his Mickey Mouse face mask, Lucas says he's feeling "sad and worried."

Manuela sends him out of the room to talk about the future. The life expectancy for those with Fanconi is 22 years. An infection could take Lucas or Owen sooner.

But the Blakes trust that a donor will be found.

"I just ask people to put yourself in my shoes," Manuela says. "What if they were your children?"

How you can help
* Registering on the donor list is easier than you think. There's no needles involved. The agency will send a kit in the mail with cotton swabs to rub the inside of your cheek.
* Donors must be between 17 and 50 and in good health.
* If you're a match for anyone in the world, the Red Cross covers your expenses for the donation.
* For more information, go to www.onematch.ca or call 1-888-2-DONATE.

nmacintyre@thespec.com
905-526-3299

Marrow drive, fund-raiser to benefit 3-year-old
By MARY RAINWATER
The Palestine Herald

PALESTINE — A bone marrow donation and fund-raiser event for Palestine 3-year-old Emma Routh will take place from noon to 6 p.m. Saturday at Dogwood Hills Baptist Church in Palestine.

The event will offer Palestine area residents the chance to donate bone marrow tissue samples in hopes of finding a match for Emma, who was diagnosed June 23 with Fanconi Anemia, a rare blood disorder that causes bone marrow to stop making enough new blood cells for the body to work normally.

“The only thing that can save Emma’s life is a bone marrow transplant,” Emma’s mother Brandy Routh said in a previous interview.

FA, if left untreated, has a life expectancy of anywhere from 18 to 26 years. But Emma only has another 12 to 18 months to receive a bone marrow transplant before her condition likely turns to leukemia.

“A bone marrow transplant takes healthy bone marrow cells from a donor and uses them to replace the abnormal cells in bone marrow,” Routh said. “A successful transplant would make enough new blood cells to work normally.”

Saturday’s event also serves as a fund-raiser to cover the costs of bone marrow tissue typing, which costs about $52 for Caucasians (minorities are exempt from the fees).

“Carter Blood Care will be (at the site) doing the donations and can take from 250 to 300 donors,” Routh said. “There will also be a silent auction, hamburger dinner, a bake sale and massages — all to raise funds to cover costs of tissue typing.”

According to the National Bone Marrow Program, the donation process, while involved, is relatively painless.

“There are two types of bone marrow donation — as a surgical procedure under general anesthesia or by a blood cord donation,” Routh said previously.

Once a donation is made, a typical person’s bone marrow is reproduced within 24 to 48 hours.

“For Emma we are looking for a female donor, brunette or blonde haired and brown- or blue-eyed — blood type really doesn’t matter,” Routh said. “Anyone who wants to donate should feel free to do so, though.

“You never know who will be a good match.”

A fund for Emma has been set up at First State Bank in Noonday, Palestine, and Frankston. For more information about the bone marrow drive or to donate bone marrow e-mail Brandy Routh at marrow4emma@aol.com or call 903-549-3125.

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Mary Rainwater may be reached via e-mail at mrainwater@palestineherald.com

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On the Net:

National Heart, Lung and Blood Institute, http://www.nhlbi.nih.gov/health/dci/Diseases/fanconi/fanconi_whatis.html

National Bone Marrow Program, http://www.marrow.org/