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

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.”

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.

You've got mail!





This is one reunion I don't think we'll make. It is nice that they are having it, though.

Blanchard students give young transplant patient a big send-off
By Melody Brumble
mbrumble@gannett.com

BLANCHARD — Huntur Newton shied from the spotlight on the day dedicated to him.

Classmates at Blanchard Elementary School celebrated Huntur Newton Day on Tuesday as a send-off for the kindergartner who'll undergo a bone marrow transplant to treat a rare kind of anemia.

"He said he didn't want to be in front of anybody (Tuesday)," Raelene Newton, Huntur's mom, said as her son eyed gifts presented to the family.

His younger sister, 4-year-old Madalyna, was less shy. She peered into a tent-like playhouse given to the family and jumped into a battery-powered Dodge Viper race car Huntur received during the assembly Tuesday morning.

Huntur has Fanconi anemia, an inherited condition that causes a host of physical problems. At its worst, the disease causes the body's bone marrow to stop producing blood cells. The disease also makes people more likely to develop cancer.

Estimates of the number of people living with the illness worldwide range from 450, the number registered with the nonprofit Fanconi Anemia Research Fund, to about 1,000 in a registry maintained by a Rockefeller University researcher.

Huntur's youngest sister, 4-month-old Morgan, will donate bone marrow for the transplant.

"We told him he has sick blood and his sister is going to give him new blood," said Huntur's mom. "He's more concerned about having good food."

She and her husband, Cody Newton, have tried to give Huntur a normal childhood. A mask over his mouth and nose is the only concession to his upcoming surgery. He must be free of infection for the transplant to take place.

"We try not to baby him," Raelene Newton said. "For example, his scissors. He has a special pair of scissors because of a problem with his thumbs. But we got him to try regular scissors, and he uses those."

The Newtons said they're grateful for support from the community.

Pickett Industries will fly the Newtons to Minneapolis on Sunday and return to pick them up about three months from now.

Employees of the Caddo sheriff's office, where Cody Newton is a deputy, donated enough leave time that he'll be paid for the entire time the family is in Minnesota.

Individuals, organizations and the school have raised more than $8,000 in the past month to help with the family's medical and living expenses.

Delta Delta Delta Wish Upon a Star provided gifts based on Huntur's wish list for his family. Teacher Cindy Bickham. who heads up the organization, said it took some prying to get Huntur to come up with his own three wishes.

Fourth-grade teacher Frances Tyl and her husband donated a toolbox to be raffled, raising more than $4,000. "We knew we couldn't take this disease from Huntur, but we knew we could help by raising some money," she said.

Happy homecoming
Boy returns from blood disorder treatment

By Airan Scruby, Staff Writer
04/07/2008

Staff Photo by Keith Durflinger

PICO RIVERA - After more than five months of intense medical treatment in Minnesota for a rare blood disorder, 11-year-old Gregory Ramsey is back home.

Gregory received a hero's welcome at Los Angeles International Airport on Saturday night. Gregory and his mother, Mary Ramsey, were greeted by his grandmother and rode home in a limousine donated for the night. The family was escorted by sheriff's Pico Rivera Station deputies to meet extended family members and a house decorated for Gregory's return.

"It's been a long time since I've seen him smile so much," Mary Ramsey said.

According to sheriff's Lt. Joe Chavez, Capt. Michael Rothans asked him to organize the escort after reading about the family in the newspaper. The deputies who participated in the escort volunteered their time Saturday night.

"Here's a little boy fighting for his life, and Capt. Rothans felt compelled to do something," Chavez said. "Just bringing him home like the hero that he is, it's worth it."

Although his medical treatment is far from over, Gregory is now recovering from a bone marrow transplant received in December for his Fanconi anemia, which can cause heavy bruising, a weakened immune system and, if untreated, is fatal.

To receive the transplant, chemotherapy and other care from doctors who specialize in the disease, Gregory, along with his parents and younger brother Christopher, traveled to Minnesota and lived at the Ronald McDonald House near University of Minnesota Children's Hospital.

The family was allowed to return home when Gregory's blood tests and other indicators showed his body was initially accepting the new bone marrow and producing enough white blood cells.

"He came home and yesterday he was playing piano," Mary Ramsey said.

She said the homecoming has meant adjusting to life away from the hospital, and preparing for more treatment at Childrens Hospital Los Angeles.

"Things are going relatively well," Ramsey said. "But we're not out of the woods yet."

Gregory will have to return to Minnesota in June for a checkup and will continue to have weekly appointments with a local doctor. His body is especially susceptible to infection in the year following his transplant, but he will continue regular meetings with his Minnesota medical team for five years.

Although he will not be able to return to school this year because of his weakened immune system, his brother will go back to Brethren Christian School next week.

His parents will return to work and family members will share the task of taking Gregory to doctor's appointments and supervising his home schooling.

Gregory's father, Darren Ramsey, and his 8-year-old brother returning home by car, and hope to make it back to Pico Rivera by Wednesday or Thursday.

"We're somewhere in Nebraska," Darren Ramsey said Monday. According to him, leaving the supervision of the hospital is frightening but exciting.

"It was scary leaving Ronald McDonald House, but at the same time it was a happy thing," Ramsey said. "I just want to go home."

While the family has been in Minnesota for Gregory's treatment, friends at home have organized fundraisers for an expected $80,000 in medical and travel expenses, above what insurance will cover.

Lezli Brown, a teacher at the boys' school and family friend, said students at the school raised more than $800 in a penny drive, and a local church collected more than $400 for the family.

A pancake breakfast was also held and an ice cream sale and raffle is scheduled at Mary Ramsey's office.

"There's an ongoing need to help pay those medical bills," Brown said.

For information on the Ramsey family, to leave them a message or to donate, go to cota.org

airan.scruby@sgvn.com

(562) 698-0955, Ext. 3029

Local boy gets hero's welcome

By Airan Scruby, Staff Writer
03/18/2008

A Pico Rivera boy receiving treatment in Minnesota for a rare illness and his brother were honored this week as a "Hero in the Making" by a pro sports team.

Gregory Ramsey and his younger brother, Christopher, received autographed basketballs, personalized jerseys and hearty applause from fans at a Minnesota Timberwolves game at the Target Center in Minneapolis on Monday.

"This is the first time they've been to a professional sporting event," father Darren Ramsey said. "Everything was a blur, it went so fast."

Ramsey said he and his wife, Mary, went with the boys to watch the Timberwolves warm up before the game and to meet with players. The family was then escorted to a special suite to watch the game against the Los Angeles Clippers.

Gregory Ramsey, 11, has been in Minnesota for more than three months battling Fanconi anemia, a rare disorder of the blood that causes a weakened immune system, susceptibility to heavy bruising and defective bone marrow. The disease, found mostly in children, can be fatal if left untreated.

Gregory received a life-saving bone marrow transplant in December at the University of Minnesota Children's Hospital and has undergone chemotherapy.

Gregory may be cleared to return home with his family this week, if test results show that the new marrow is growing and producing healthy cells, and if his body is free of infection.

It was partially because he is nearing the end of his treatment that he was chosen to attend the game, according to a Ronald McDonald House representative.

Josh Williams, manager of marketing and communications for the Ronald McDonald House where the Ramseys are staying, said the Timberwolves approached him about children who could be honored at the game on Monday night.

"Gregory's been through a lot and he's just completing his 100 days," Williams said. "Especially with them hopefully going back home soon."

Although he is improving, Gregory is still weak and had to wear a mask to protect from infection while he chatted with players and met team President Chris Wright. He also uses a wheelchair because of a hip biopsy that morning. Doctors removed a piece of bone for testing, so Gregory felt too sore to stand.

"He was pretty sore last night," Darren Ramsey said. "But the last couple of days, he's actually been feeling pretty good. And he was really into the game."

According to Timberwolves spokesman Matt Makovec, the team features a hero at every home game. Some are military heroes or volunteers, while others are fighting disease or other challenges.

After the first quarter, the boys were guided to the floor, where they were introduced over the loudspeakers.

For Gregory, being in front of the large crowd at the game was nerve wracking, but he said he liked watching the game from good seats and spending time with his family.

Christopher, 8, said he enjoyed the game and the chance to meet the players.

"I got to go on the field, and I got to shoot some hoops and we got to go to the suite that has lots of popcorn and cookies," Christopher said.

airan.scruby@sgvn.com
(562) 698-0955, Ext. 3029

We had a Hope for Henry Board of Directors meeting on Friday. A lot of great people are helping out now. The meeting was at NAB, which is where I worked when you were born. They were nice to let us use their building.



That's you in your NAB onsie talking with Papa Sy. Wondering what you guys were discussing. You look like you were having a great time.

Mom did a presentation to let everyone know what we've been up to the past few year. I got to talk about this story that was in the newspaper the day before the meeting.

On the video that goes with the article you can see Dr. Wagner. He couldn't make the meeting 'cause he is very busy saving kid's lives. And, if you look on the bed of the kid, Nate, you can see he is being distracted/entertained by his Hope for Henry Foundation portable DVD player. How cool is that. Well done, you!

Nate is on the transplant floor at Fairview. He looks like he is in one of the end rooms, not sure if it is yours (11?) or Molly's. He has a really tough disease, but he is in the best hands possible.




Son's rare disorder leads mother to a desperate gamble

By Anita Manning, USA TODAY

MINNEAPOLIS — A little boy, 18 months old, trains his solemn brown eyes on visitors to his room here at the University of Minnesota Children's Hospital, then, after a moment, breaks into a smile.

He doesn't have a lot to smile about. His face is marked by sores and blisters. His right ear is covered with clotted blood. His right armpit bears an angry red scar. Under the bandages that cover his arms, hands, trunk, legs and feet are more scars, more blisters.



Nathanial Liao, called Nate, has a rare genetic disorder caused by lack of a protein that is needed to keep skin attached to the body. When he rubs his ear, the skin comes off. If someone lifts him from under his arms, his armpits blister. It affects skin inside his body, too. When he throws up, bits of his esophagus come up. The skin heals, but the repeated injuries leave scarring that eventually will cause his fingers and toes to web. In time, if nothing intervenes to stop his disease, he will develop an aggressive form of skin cancer. He will die young.

But now, Nate may have a chance. In a leap into the outer limits of medical knowledge, doctors on Oct. 19 transplanted bone marrow and cord blood cells from his healthy brother Julian, 3, through a catheter in Nate's chest and into his bloodstream.

Doctors hope the healthy cells will move into Nate's skin and correct the genetic defect known as epidermolysis bullosa, or EB.



EB affects about 20 of 1 million babies born, but the most severe form, recessive dystrophic EB, which affects Nate and his older brother, Jake, 4, occurs in about 2 out of 1 million births.

If the treatment works, even partially, doctors say they may be able to try it on Jake in about six months. Until Nate's transplant, it only had been tested in mice genetically altered to have EB. The affected mice have a life span of two weeks, but in experiments last year, researcher Jakub Tolar of the Blood and Marrow Transplantation program at the University of Minnesota found that three of 13 mice infused with cells from the marrow of healthy mice didn't die. Their blisters cleared up, and their skin grew the missing fibrils that anchor skin to body.

Through trial and error, Tolar had isolated the cells that produced the missing protein, known as collagen VII, and corrected the genetic mutation.

"I was stunned," says researcher Angela Christiano of Columbia University, who identified the gene for dystrophic EB. When she heard the news, she flew to Minnesota to see for herself. "The fact that any survived, three out of 13 is tremendous," she says.

Still, it is unusual to go so quickly from a small mouse experiment with a 25% success rate into a human trial. That it happened at all is due to the persistence of Theresa Liao, the boys' mother.

Both parents carry gene

Theresa, 37, and her husband, Roger, 44, an investment programmer, of Clarksburg, N.J., had never heard of EB and had no idea when their first son, Noah, was born in 1999 that they each carry the gene for it. With each pregnancy, there is a 25% risk.

Noah is healthy, but when their second son, Jacob, was born in January 2003, Theresa knew right away something was wrong.

"I said, 'There's something wrong with his feet,' " she says. "The doctors and nurses made a little wall so I couldn't see him."

Liao says experts told her all she could do was to keep Jake bandaged and comfortable for as long as possible.



"That wasn't good enough," she says, and she began a personal campaign to find researchers who would try to help and to raise money for their work.

She "was just not going to stop until she found something," says Madeline Weiner, a nurse educator in Chapel Hill, N.C., who works with the Liaos and other EB families. "She didn't just contact people, she pursued them. She didn't want to take a chance of missing an opportunity to help her children."

Theresa became pregnant with Julian, who was born in January 2005. A prenatal test showed he was healthy, and his bone marrow was a close, though not perfect, match to Jake's.

The parents decided to bank Julian's cord blood on the chance it could help Jake someday.

Then came her pregnancy with Nate. A prenatal test showed he had EB, and his marrow was a 100% match for Julian's.

By this time, Theresa had met John Wagner, head of the pediatric Blood and Marrow Transplantation Program and clinical director of the Stem Cell Institute here.

In spring 2004, he was in New York to make a speech on stem cells and had stopped in at the New York Blood Center. Theresa approached him and thrust Jake into his arms. "She said, 'Save my child,' " Wagner says. The baby "was bleeding, parts of his skin were coming off. I was really sort of shaken."

Wagner, who specializes in research on incurable diseases, says he often is contacted by desperate parents, but he couldn't forget the incident. "I came back from New York traumatized," he recalls. "I just couldn't let it go."

A chain of events had been set in motion. At a conference after that first meeting, Wagner met genetics researcher and EB expert Christiano, who told him about the mice engineered to get the disease and suggested the transplant experiment. With funds raised partly by the Liao family, Tolar began testing different types of marrow cells to see if he could correct the genetic defect in the mice.

Back in New Jersey, the Liaos were debating whether to carry on with Nate's pregnancy, grappling with the ethics of knowingly bringing a child with EB into the world.

They only had to look at Jake to know what lay ahead for the baby. Every fall, every bump means a bloody, painful new wound. Eating anything but soft foods can tear up his intestines, so he gets extra nutrients through a feeding tube implanted in his stomach. Fingers on both hands have fused because of repeated scarring. He has no toes. The full-body bandage wraps are changed every 12 hours, taking one to two hours.

Despite that, "Jacob is smart and funny, really wonderful," his mother says. The prospect of a second child with EB didn't scare her, she says. "I know what I'm dealing with."

But "my husband and I were on different spectrums" about the unborn baby, she says. "He didn't want to see him suffer. I didn't either, but at the same time, we found out that Julian and Nate were a six-out-of-six match," meaning all genetic markers match up.

Julian and Jake match four out of six. The closer the match, the lower the risk of rejection.

"Knowing we fought so hard for Jake, I felt this is the chance, this is the window of opportunity. If we threw this window away, what chance would Jake have?"

If ever there is going to be a cure for the disease, she says, someone has to go first. "God sent these boys to me for a reason. We've made it this far, and worst case, if we have a horrific result, and we have a mortality with Nate, I went down swinging. I'm not only doing this for my kids, but for everybody's kids. I did not do this lightly."

To reduce the risk that Nate's body will reject the transplant, he had to be given chemotherapy for eight days to essentially destroy his immune system.

"We have to eliminate it and then replace it," Wagner says. It's a risky procedure because "when we destroy the bone marrow, the patient is at risk for infection. He's susceptible to everything."

On that first day of chemotherapy, Wagner was nervous. He says he always is when a new, experimental treatment is about to begin. "I love what I do. But last night was a hard night, because at 4 in the morning, there's no turning back."

No guarantees

On the day of the transplant, Julian was sedated in an operating room at University of Minnesota Children's Hospital, Fairview, at 8 a.m. A doctor and nurse inserted two long needles through Julian's lower back into the bones of his pelvis and began withdrawing thick red liquid, the bone marrow containing blood stem cells. It took about half an hour to harvest 250 cubic centimeters, about a cup, of marrow. The liquid was processed to isolate the stem cells that would be infused into Nate that afternoon, along with the cord blood cells that had been frozen at Julian's birth.

"We know the cell responsible for correcting the (defect) is at least in marrow," Wagner says. "It may also be in cord blood. So that's the reason we're doing both."

He says there are no guarantees the transplant will cure or help Nate. "I've showed proof of principle this could work in an animal model, not in humans."

Wagner says Liao understands "it's possible Nate may not survive the next 100 days," but "she is also aware that if we don't do something, it will be a very difficult and shorter life for him."

The experiment also may point researchers toward treatments for other diseases.

"EB is a rare disease," Tolar says, "and in the history of biology and medicine, many cures start with a rare disease that then extends to others."

Whatever the outcome, Liao says the ordeal is worthwhile because something important will have been learned, some scientific advance toward a cure will have been made.

The strain of the treatment and being far from home is hard on all of them, she says. "But this is nothing compared to one day of EB."

Nate is expected to stay at the hospital for about three months. His doctors say he is doing well so far and improving a little each day.

Something really terrible happened. The bridge that goes over the Mississippi River in Minneapolis fell down. It is the one right next to the hospital. We used to drive over it about twice a day going between the apartment and Fairview.

All of the Fanconi families who are in Minneapolis for transplant are okay. Dr. Wagner was on the bridge 15 minutes before it fell. And Stacy Stickney Ferguson was on it right when it collapsed. She is okay. Here is a story in the newspaper that tells what happened.





Vehicles are stopped on a section of the Interstate 35W bridge on the east bank of the Mississippi River after sections of the bridge collapsed near downtown Minneapolis Wednesday. The arrow shows the vehicle being driven that day by former Cedar Rapids resident Stacy Stickney Ferguson.

Aug 3, 2007

Former C.R. resident on I-35W bridge as it collapsed
Ferguson says bridge event 'life-changing'

Stacy Stickney Ferguson, a 1978 Cedar Rapids Kennedy High School and 1982 Luther College graduate, said today she still was trying to return to normal life after being on the Interstate 35W bridge that collapsed in Minneapolis Wednesday evening.

"This was a life-changing event for everyone that was touched by it," Ferguson, a daughter of Bill and Kathy Stickney of rural North Liberty, said by phone today.

A photo showing Ferguson's van has appeared on the front pages of Thursday's and today's Gazette. It is next to a flatbed truck with a white cab, and aimed downward on a slab of highway.

"I was in the lucky part. I wasn't further along (on the bridge) and so I'm grateful for that," she said.

Ferguson, 47, was going home from work when the accident happened. She is with the National Marrow Donor Program, where she works with families seeking bone marrow transplants and several facilities that include University Hospitals in Iowa City. Ferguson moved to Minneapolis 15 years ago.

She said her the Gazette phone interview she she was fortunate and feels for others in the crash who suffered.

Here are excerpts from the interview, starting with what she experienced on the bridge Wednesday:

"The bridge began to rumble. And dust began to raise in front of me. At first I just thought it was the normal vibration as trucks had gone by. But within a matter of a second or two I began to see in front of me the rocking of vehicles. And my car was rocking back and forth. And because I wasn't going so fast I was able to at least think that I was going to stop.

"And the roadway then began to decline and fall in front of me. And within just a second or two we were then still. But it was horrific, the magnitude of what had happened ahead of me -- vehicles continuing to go forward and careen down, a (road) worker careening down and other workers hollering for help. And at the same time the workers were yelling, 'The bridge is collapsing.' And yelling for the people to get off.

"So the group that I was in proceeded to get out of our cars and walk away from the decline as the pavement was broke behind us. So then we crawled over the fence of the highway and we were able to walk away. ..

"Many cars are reported to be in the water. And many people have survived getting themselves back to the surface."

Gazette: What did you see out your front window as you were aimed down? What were you seeing?

Ferguson: "... You're driving along, life is good, the road is flat and then there's the sensation of moving downward. So what I saw was the rumbling and the dust rising and the roadway giving way and falling downward. The back end that I was attached to was still attached so I was not in involved in the section that free-fell down. It's kind of hard to describe."

Gazette: Were you seeing just nothing at the end of that stretch of road or could you see the other stretch of broken road on the other side?

Ferguson: "I couldn't see beyond just the edge of that broken road. I was up higher and everything else had fallen below. And, keep in mind, it's just a matter of seconds. We were then getting off the bridge and removing ourselves, you know, pulling ourselves away from the wreckage."

Gazette: It would seem obvious that not seeing much after that road then would cause some fear for you? Is that a fair assessment?

Ferguson: "I think everyone was afraid. There was a worry that there would be further collapse, even though we were still in those few moments we were moving ourselves off of the bridge. ... Then it was quiet, and then the sounds: the responders, the people in the crowd, people helping people around them. The first responders then came. We're near the university (University of Minnesota) so people came that were in the neighborhood to see what was happening and try and help those that were there."

Gazette: How important was it to let your family know that you were OK?

Ferguson: "Immediately, of course. ..."

Gazette: Have you been able to look back on this and put into perspective the narrow brush that you had with death, to just put into perspective?

Ferguson: "I think that's part of the process in making meaning out of this turn of events. I feel that I was not near death. I was in a place where I did not have that immediate threat. I left the scene without a scratch. I feel that there were other people who were in a more precarious place than I was."

Gazette: Do you think about those folks much?

Ferguson: "Oh, yes. This was a life-changing event for everyone that was touched by it."

This is a video from the Super Hero party that we had a few weeks ago at Georgetown. Hackensack and Minnesota had parties too. The party was in the Lombardi clinic, but this movie is from upstairs on the 5th floor. We took the party to the kids who were in isolation and couldn't come to clinic.





"Henry's spirit will live on."

We went out to the cemetery on Sunday. The weather was really nice. We visited Zack Klein, who is so close to you now. I tried to help Zack's mom and dad get something special on his headstone. Unfortunately, it isn't going to happen. I can understand why, but it is still a disappointment.

The next thing that I am trying to make happen is making sure Molly and her mom meet Jon Bon Jovi. That should happen in July. I cannot fail. I'll keep you posted.

I have been spending a lot of time organizing our pictures. There is (are?) a ton. Which is good. I am going to make a big "Henry at St. Michaels" photo book to put out there. I am going to match pictures of you taken in St. Michaels with nice pictures of birds and trees and things that we've taken out there.

Last week was a tough Henry week. Mom and I spent a lot of time thinking of you and crying. Mom rewrote one of the chapters of her book and it is great. It is about you and Bella. All that came from nowhere. I am glad it happened.

I haven't written you for a long time. I just keep talking to you in my head and writing these notes on scraps of paper that I have all over the place.

I finally decided it was time to get back to it. Here goes.

We went to St. Michaels this weekend for Memorial Day. It was Papa Sy's 77th birthday.



Andrew and Tracy and your cousins were there. Our friends Hugh and Mary Beth and their family rented a house nearby and spent a lot of time with us. Nice.

We did the usual stuff. Rode bikes, played baseball, saw a lot of animals, went kayaking (just me -- no-one ever wants to go with me -- I am officially "Chopped Liver"), put boats in the water and stuffed ourselves silly.

This snake was on the driveway when we came home from riding our bikes into town. He was "sunning" himself. Joe and Sam and I watched him until he slithered away.



This is a bird that Joe and I found in the batting cage at the local St. Michael's high school. We couldn't hit 'cause we didn't want to hit the bird.



The bird wasn't moving. He didn't seem like he could or that he wanted to fly. I opened up the netting to let him out and he didn't budge. It was then that I realized that the bird was staying inside the batting cage for protection.

I told Nana about the bird and she said she had a friend who "rescues" birds. I went back later on to put the bird in a box to bring to Nana's friend and the bird had died. When Joe was going to bed that night I asked him what the highlight of the day had been. He said, "the bird." I didn't have the heart to tell him what had happened.



This is a really blurry picture of the Vice President's helicopter over Papa Sy's house. I recognized the whirr of the rotors from home. His helicopter is the only thing that can fly over our house in DC and the house in St. Michaels.

The Vice President gave a talk to the soldiers graduating West Point in the morning and by the afternoon he was in St. Michaels. Mom said that he lands at the Inn at Perry Cabin and then drives up to his house. I still want to get the ride from our street in Washington to here in the helicopter. No traffic!



Uncle Andrew and I helped Papa Sy put the Tashmoo in the water. The battery was dead so I had to paddle it to the dock. We got Rulen the Waves in halfway. It is a great adventure helping Papa Sy with all of these boats. We needed a higher tide to carry the sailboat off the trailer. I felt bad leaving Papa Sy without having gotten that boat all the way in.



The pool was freezing but that didn't stop your brothers and your cousins. I was in the Broad Creek a bit and that was fine. A lot of muck and ooze but no jelly fish, so I was happy. Joe looks pretty happy here.



Tonight is Michael's birthday. He is 13. A real teenager or a Jewish man, take your pick. His other grandparents, Arlene and Harvey, are having a pool party at their house tonight. We'll be seeing everyone all over again.

Some of the notes I am keeping are just things that I want to tell you about your brothers. Here goes:





-Every morning I find an entire playground's worth of wood chips in Joe's sneakers. For the life of me I don't know how he walks around like that all day and doesn't seem to notice or complain.

-Jack did incredibly well on his tests in school. He is really smart. I am proud of him. He is way smarter than me. Yesterday he started telling me that he thinks about what happens in different dimensions. I don't even know what other dimensions there are. He explained to me that there are other universes and he thinks about what those other universes are like.



-Joe has decorated his room in pictures of athletes that he has cut out of magazines and books.

-Your brothers, both of 'em, won't wear jeans.

-Joe has the bad habit of admiring his hits in baseball. Mom explains that he is the only player who turns triples into singles because he stands at the plate after he hits the ball to watch how far it goes. He reminds me a bit of Manny Ramirez of the Red Sox.



-Jack is a big fan of comedy. He listens to Steve Martin, Bill Cosby and Monty Python.



-Joe isn't big on learning to swim or ride a bike. This frustrates me a lot but I know it is only a matter of time. Patience. He can't go through life not knowing how to ride a bike, right?

-Both guys and Mom became fans of this show called American Idol. Joe was crushed when his favorite, a guy named Blake, didn't win.

-Jack watches the Simpsons... maybe too much. The Simpsons Movie is coming out soon.



-Joe watches SportsCenter all the time. Our routine is that he comes down for breakfast and we watch the highlights together. He always asks me "Who won," and I try to teach him to read the scores and learn for himself.

-Jack had a ceremony at school where he and his classmates got their own Chumashim. What was interesting for me is that when the whole class was singing I could hear Jack's voice separate from everyone else. I guess that is what being a parent is.



-Joe is obsessed with jigsaw puzzles. He went from ones with a few pieces, to 100 pieces to 200 pieces and I think he is working on a 500 piece one. Mom helps him out, but he is good on his own.

-Jack likes the Red Sox and Joe is a Yankees fan (I am rooting for the Nats and wish they would too)

So I guess what I want to report to you Big Brother, is that your two younger brothers are doing great. Jack needs to be a little nicer to Joe but otherwise, they're cool.

Aside from Mom's trip to China... here are some pictures from that...













...there is other big news that I didn't report. First, Zhenny left us. She wasn't working enough hours, so she needed to go to a family who needed her more often. You were the one who told me to hire Zhenny. I still remember calling her from Minnesota to tell her that we were coming home without you. She had only been working with us for a few weeks at that point. That was hard. We are going to miss her - Joe most of all. They have an incredibly close bond and Joe is so tight with her husband Peter and her son Jeff. Hopefully, Zhenny can come over to babysit from time to time.

The other really, really big news is that Papa Teddy is getting married to his friend Jeri. That is happening in June. I am Best Man. I am really happy for him.

Papa Teddy and Jeri just went to Italy for a visit. Here are some pictures of their trip.







Aunt Abby, Uncle Andy, Cousin Michael, Rachel, Joshua and little Noah are heading to Italy next month. Bill and Cristina went to Italy this weekend for a few days themselves. Seems like the place to be. I told Mom that I'd like to go to Israel after we go to Spain next summer with everyone for the 10th Anniversary of Bill and Cristina's wedding. You and Grandma are the ones who made the original trip who won't be there for the reunion.

 

That's a picture of you and me on a boat from that trip.

Hey, we had 3 Israeli girls stay at our house this weekend. They are going into the army soon and before they start their service they travel to the United States for a while. I'm glad we were able to host them. They said to visit when we go to Israel. Maybe we will.