Letters to my son.
|
|
| Dear Henry Letters to my son. |
|
|
Tuesday, May 30, 2006  We went to St. Michaels for Memorial Day. We are very fortunate. I don't take any of this for granted.  Mom and Joe tubing! We spent a lot of time at the pool and on the water because the weather was perfect. Uncle Andrew and Aunt Tracy and Emma and Sam were there.  This is Isabel and Joe at the Maritime Museum outside the Crab Claw.  Here is a picture of Jack and Cousin Sam. Uncle Bill and Cristina and Isabel and James and Sophia stayed over too. We also had a visit from Cousin Catherine and Tim and their little girl, Sarah. She is a total cutie. It was nice having all of those people together. We had other visitors come by.  Don't Mom and Jack look happy. We had dinner at the Crab Claw. All of the kids went and checked out the live crabs before they were dumped into the boiling water. We also went tubing and bike riding and I went for long kayak rides. Joe doesn't want to learn to swim or ride a bike. He kinda let on that he doesn't think he'll be able to keep up on bike rides and is scared of being left behind. I told him that I'd never leave him behind. Then he told me that he doesn't want to fall. I told him that everyone falls and usually you just get right up and start riding again. I explained how I had a big wipeout - on a pollen covered driveway - when we were in St. Louis but didn't get hurt and just jumped right back on my bike.  Aunt Tracy and Uncle Andrew got a new dog. His name is Vasco. He is a Portuguese Water Dog. Papa Sy named him for the Portuguese explorer, Vasco De Gama. He really doesn't like the water much, though.  Papa Sy has a new boat. It goes really fast. The cousins, and Mom, did a lot of tubing behind it. Your cousin Sam had the biggest smile on his face. He couldn't get enough. Sam and Jack and I rode to St. Michaels and back to the house a few times over the weekend. Joe rode on the back of my bike on this trailer thing. It is like a one wheel bike connected to my bike. We have included a new detour on our bike route. We now turn down Mt. Misery road. The Secretary of Defense lives in the house that is known as Mt. Misery. I think I may have explained before that the house and street are known as Mt. Misery because that is where they used to "break" slaves. Jack asked me to explain "breaking" slaves and that was hard for me to do. I started saying that it was a place where "inhuman" things were done to black slaves. Then I stopped because I realized that all of slavery is inhuman. I then said how Fredrick Douglass is a famous slave who was sent to the owner of Mt. Misery by his "owner" because Frederick Douglass didn't want to be a slave and wouldn't submit to his master. Basically, Mt. Misery was a terrible place where a terrible person did terrible things to black slaves. The fascination for Jack and Sam is the Secretary of Defense. He is a guy who works here in Washington and he is in charge of wars. Not a great job. Jack and Sam wanting to ride past there kinda reminds me how Aunt Jen and I and all of our friends used to go over to Denny McClain's house when we were kids. Denny McClain was a pitcher with the Washington Senators, and he lived a couple of blocks away from us in Bethesda. He had been a great pitcher for the Detroit Tigers - he was the last 30 game winner in baseball. Then they lowered the pitcher's mound and no-one ever one that many again. Denny McClain fell on hard times and started taking drugs and selling drugs. That was after he left Washington. All I remember is him handing us and the neighborhood kids baseballs. That was so cool. He ended up in jail. Well yesterday after we all rode to town, Joe and I went off and had a really nice ride, just the two of us. I like spending alone time with him and with Jack. I asked Joe to rhyme words. I said, "Pool," and he said "Albert Puljos." Then he said, "how about 'Fart,' which he then rhymed with 'Pop Tart.'" He is a funny kid. We rode up to the "poopy cows" as Joe calls them. The Vice President lives next-door to the poopy cows now. Here is a picture of him in the back of his house in St. Michaels with his dogs. It is an interesting coincidence that he lives next door to us in Washington and in St. Michaels.   This is a picture of the Vice President and the Secretary of Defense at the Secretary's house on the creek in St. Michaels. I paddled past it in the kayak. Uncle Bill said he saw helicopters overhead when he was sitting at the pool. It must have been either the Vice President or the Secretary of Defense.  This is Joe passed out on the couch in the breezeway from having too much fun. He is also going through a not-so-fun stage where he either doesn't listen to what we say or won't do what we ask him to do. Last night on our drive back home Mom asked him to be very careful with the snow globe that he brought with him on the trip. It was a snow globe that Mom bought for you at the beach. Two seconds later he had broken it and was covered in liquid and glass.  This is a photo that Mom took of Joe. It was taken the same day as the next picture.  This is a photo that Uncle Andrew took of Joe. He looks different in this than any other photo I've seen - and totally different from how he looks to me. He looks more grown up. We were sad for so many reasons. The biggest one is that this snow globe had special meaning. Mom told me how she had bought it for you back in August 2002. After you almost died and were hospitalized at Georgetown, Jack went down to the beach for a few days with Aunt Abby so we could focus on you. Mom didn't remember what we did with Joe. When we felt you were going to be okay, Mom went down to the beach with Val and picked up Jack to bring him home. It was then that Mom bought the snow globe for you - and a stuffed whale for Jack. There was a penguin in the snow globe. It is now sitting all drained of its snow with a very cracked glass globe. Of course, we were also sad because Joe could have hurt himself with the broken glass, and because he broke it right after Mom asked him to be extra careful. It was Memorial Day and we learned of an interesting tradition they have in St. Michaels. They fire cannons. It was LOUD!   We went and visited with Aunt Alice and Uncle Peter at their new house. Wow. I wish you could have seen it. It is spectacular. What was nice about this trip is that we ran into and saw friends and family all weekend. It felt like we were home. 
posted by Allen |
Tuesday, May 30, 2006
Thursday, May 25, 2006 Joe came downstairs wearing a new pair of Nikes. They are very cool looking. They are silver and must be super fast. But we just went shoe shopping and I didn't remember us getting them for him. I asked Mommy about them and she told me they were your shoes. I guess he found them in his closet. We bought them for you just a little before you died. You never got a chance to wear them all that much. They fit Joe great. You got smaller near the end. So even though you were seven when we got them for you -- Joe, who is only four, can wear them now. I am happy for Joe. He loves those sneakers and won't even consider wearing the new shoes we just bought him. Even though he is in the shoes they look empty. Seeing those sneakers makes me sad.
posted by Allen |
Thursday, May 25, 2006
David Ortiz came to work today. Jack played hooky from school. It was nice to see him again. Last time it was with you and he was in the Twins dugout. I have written to you about him a couple of times. He is a super nice guy. I had him sign the bat he gave you. He also signed a bat that I've gotten signed by Cal and Derek Jeter. We'll auction that off for the Hope for Henry Foundation. I hope Jack had a good time. I did.    
posted by Allen |
Thursday, May 25, 2006
  May 23, 2006 Tuesday U.S. REPRESENTATIVE NANCY PELOSI (D-CA), HOUSE MINORITY LEADER, DELIVERS REMARKS ON STEM CELL RESEARCH REPRESENTATIVE PELOSI DELIVERS REMARKS ON STEM CELL RESEARCH, AS RELEASED BY THE HOUSE MINORITY LEADER'S OFFICE MAY 23, 2006 SPEAKER: U.S. REPRESENTATIVE NANCY PELOSI (D-CA), HOUSE MINORITY LEADER PELOSI: Tomorrow, we will observe the one-year anniversary of the passage of the Stem Cell Research Enhancement Act of 2005. The champion for that act is with us here today, Congresswoman Diana DeGette of Colorado. The stem cell research that Congresswoman DeGette has championed has the power to cure. Every family in America is one telephone call or one diagnosis away from needing this critical research. We are hoping as we observe this one-year anniversary of the bill's passage in the House that the Senate will take action to send the bill to the President's desk and give hope to the American people. It is what Americans want in overwhelming numbers. It is about good solid science, good ethical guidelines, and about keeping Americans healthy. We are bound together today around a picture of Henry and his parents, Laurie Stongin and Allen Goldberg, who will tell their story. But Henry's time with his loving parents was cut far too short. Because of a genetic disease called Fanconi anemia, Henry passed away in 2002, at just 7 years old. It is in tribute to Henry and so many others that stem cell research has the power to cure that we hope this bill will be passed. Copyright 2006 Congressional Quarterly, Inc. 
posted by Allen |
Thursday, May 25, 2006
Wednesday, May 24, 2006 Mommy and I went up to Capitol Hill yesterday to talk to a very important congresswoman, Rep. Nancy Pelosi, and people from newspapers and tv stations about the need for the government to support research that can help other families with Fanconi anemia.  We carried a picture of you, which Congresswoman Pelosi held throughout the press conference. Mom was amazing. She spoke to the reporters and told them that we can't let any more kids like you die. If we spend more money for the right things we can save lives. Mom was very eloquent. You would have been proud of her. I was. The congresswoman said that it was very nice of us to stay involved after your death. She said that so many families just "check out." I told her that I like to "keep the wound open," and that what better legacy for you than to help save the lives of other kids. Hey, guess what. Kathy Fiorello told Mom that someone who signed up to be a bone marrow donor at one of your drives just donated marrow for someone's transplant. The way I do math means that there is one more life you have saved. I also explained to Rep. Pelosi that there is one family that I can think of that seemed to check out. The President's family. I don't know how the President can oppose spending money on research when his sister died of Leukemia. I said to her that "letting your family experience inform your decision making is not a sign of weakness." The President is busy listening to the wrong people and not his heart. I was at lunch with the President's other sister on Sunday. She is sitting a table behind me.  It wasn't the right time to talk to her about all of this, but I wonder how she feels.  DeGette's stem cell bill stuck A year after success seemed assured, vote in Senate stalls By M.E. Sprengelmeyer, Rocky Mountain News May 24, 2006 WASHINGTON - One year ago today, champagne flowed and glasses were raised in Rep. Diana DeGette's Capitol Hill office to toast a hard-fought win for legislation expanding embryonic stem cell research. The next morning, DeGette and lead co-sponsor, Rep. Mike Castle, R-Del., tied their legislation in a big, red bow and delivered it to senators who vowed to win swift, final passage. "Get it done," DeGette told them. But one year later, nothing has been done. The bill still hasn't moved, as senators struggle to reach an agreement on how to proceed. Backers' frustration has been building. So on Tuesday, DeGette and her allies marked the anniversary of what has turned into a hollow victory. "This job needs to get done," DeGette said in an interview. "The research has been put back by five years." Supporters of embryonic stem cell research say it holds great promise in finding cures for diabetes, multiple sclerosis and other crippling diseases. But they say it has been held back by President Bush's decision to limit federally funded research to the limited number of stem cell lines that were available shortly after he took office in 2001. The DeGette-Castle bill would greatly expand federal research on leftover embryos from fertility clinics, while also enacting ethical standards meant, in part, to prevent embryos from being created for profit. That has not satisfied opponents, however, particularly religious conservatives. They equate experimentation on embryos to the destruction of human life and claim promises of medical breakthroughs are nothing but "science fiction." "I know there's a huge press coming from media sources, from certain ends of the pharmaceutical- experimentation gang, and outrageous claims being made for therapy which remains unproven 20 years after it was begun," said Paul Schenck, director of the National Pro-Life Action Center. Schenck warned that if Senate Majority Leader Bill Frist, R-Tenn., a physician and likely 2008 presidential candidate, finally does bring DeGette's bill up for a vote, "he'd certainly lose the Catholic, evangelical, conservative religious support he'd hope to have." Those types of election-year considerations are in the background as supporters of the bill hope for a Senate breakthrough this summer. On Tuesday, DeGette led a parade of lawmakers who marked their yearlong wait with a series of fiery floor speeches. DeGette cited Frist's comments last summer publicly backing some type of expanded research and promising to schedule a vote. "At that point, it appeared the hopes of so many patients and caregivers would finally be realized," DeGette told colleagues. "Unfortunately, Mr. Speaker, that's the last we heard of this bill." In the Senate, DeGette said, "they've proceeded to work on numerous other bills, including the designation of 46 post offices, but they have refused to put patients first." DeGette and House Majority Leader Nancy Pelosi, D-Calif., met with Allen Goldberg and Laurie Strongin, who have used the death of their 7-year-old son, Henry, as a rallying cry for expanded research. Henry was born in 1995 with a rare genetic disease, Fanconi anemia, which caused his bone marrow to fail to produce blood cells. The couple had a second child whom they hoped could donate stem cells to reverse Henry's condition. But the child turned out not to be a suitable match and Henry died in 2002. The couple sees expanded embryonic stem cell research as critical for families like theirs. "We feel with every further delay, more and more children are dying from diseases that could be helped with this research," Strongin said in an interview. Her husband turned to DeGette at one point and said, "Please make it happen." Even if the Senate approves DeGette's legislation, President Bush has threatened to use his first-ever veto to block it. But backers hope he will heed public opinion polls and back off the threat, particularly in an election year. "The fact that a year has passed and the Senate has not taken action is crystallizing the issue and making it an election issue," DeGette said. It already has surfaced in congressional races around the country, and the Democratic Congressional Campaign Committee is expected to target Republican congressional candidates who would block expanded research. Schenck predicts the bill will eventually be considered, but he projects a different kind of political fallout if it passes. "What we'll have is a battle in the election season," he said. "Do those who believe in trading some innocent human beings for the comfort and health of others win out? Or will those who (oppose) the destruction of life win out? That remains to be seen." Pelosi Urges Senate to Act on House Passed Stem Cell Research Enhancement Act 5/23/2006 7:07:00 PM -------------------------------------------------------- To: National Desk Contact: Brendan Daly or Jennifer Crider, 202-226-7616, both of the Office of House Democratic Leader Nancy Pelosi WASHINGTON, May 23 /U.S. Newswire/ -- House Democratic Leader Nancy Pelosi and Congresswoman Diana DeGette of Colorado joined Allen Goldberg and Laurie Strongin, founders of Hope for Henry, an organization that works to improve the life of children with threatening illnesses, to urge the Senate to pass the Stem Cell Research Enhancement Act. Below are Pelosi's remarks: "Tomorrow, we will observe the one-year anniversary of the passage of the Stem Cell Research Enhancement Act of 2005. The champion for that act is with us here today, Congresswoman Diana DeGette of Colorado. "The stem cell research that Congresswoman DeGette has championed has the power to cure. Every family in America is one telephone call or one diagnosis away from needing this critical research. We are hoping as we observe this one-year anniversary of the bill's passage in the House that the Senate will take action to send the bill to the President's desk and give hope to the American people. It is what Americans want in overwhelming numbers. It is about good solid science, good ethical guidelines, and about keeping Americans healthy. "We are bound together today around a picture of Henry and his parents, Laurie Stongin and Allen Goldberg, who will tell their story. But Henry's time with his loving parents was cut far too short. Because of a genetic disease called Fanconi anemia, Henry passed away in 2002, at just 7 years old. It is in tribute to Henry and so many others that stem cell research has the power to cure that we hope this bill will be passed." http://www.usnewswire.com/
posted by Allen |
Wednesday, May 24, 2006
Sunday, May 14, 2006 Today is Mother's Day.   I want to put a lot of the photos that I scanned for Mom's birthday. Here are some to start.     
posted by Allen |
Sunday, May 14, 2006
 
posted by Allen |
Sunday, May 14, 2006
Wednesday, May 10, 2006 Today was Truck Day at the Gan. I think they should really call it "Horns on Trucks Day".  Joe has a really good friend named Sammy. Sammy's family is from Mexico. I like Sammy a lot because he remembers my name. He remembers my name because it is the same as his brother.  Another kid in Joe's class is Colin. This is Colin and Joe in a mail truck.  Scude is Colin's nanny. Isn't that a crazy coincidence. It is good to see Scude. Colin likes me a lot. He always holds my hand. He is very sweet. Joe looks like he stuck his finger in a light socket but he is just jumping for joy.  Sammy is having a good time too.  Joe is giving us his best blue lollipop smile. Here is a shot of you and Mom at Truck Day a few years back. I think you and Joe look a lot alike. At least you have the same smile.  I took the subway from the Gan to work. I ran into David Lane's dad who was also going to work. I think a lot more people are going to take buses and the subway because gasoline costs a lot these days. Whenever I hear about high gas prices I think back to when we drove from Washington, DC to Minnesota for your transplant. We stopped in Chicago to get something to eat and fill up. The price for a gallon of gas was $2, which seemed so incredibly high. It is $3 now. I guess it is a good thing we don't have to drive to Minnesota anymore.
posted by Allen |
Wednesday, May 10, 2006
Hey, check it out. A newspaper story about Nana. Both Nana and Papa Teddy do a lot of volunteer work. They are good examples for all of us.  Never too old to learn, never too young to teach Knowledge moves across generations through Interages Wednesday, May 10, 2006 by Fred Lewis Staff Writer The world in which Patricia Strongin grew up couldn’t be more different than that of the youngsters she mentors at Eastern Middle School in Silver Spring. School life, home life, pop culture, politics, music — almost everything — has changed since she graduated high school in 1955. But instead of letting those differences form a barrier between the older and the younger generations, Strongin chooses to make connections with youngsters through Interages, a Wheaton-based nonprofit that is celebrating its 20th year of pairing senior citizens with school-aged children in a variety of interactive intergenerational programs. ‘‘In my first two years [of volunteering], it was a real feeling of being helpful to someone who really appreciated the attention she got,” said the Washington, D.C., resident. ‘‘And I felt I was dealing with a very important issue in the country today.” One of nearly 200 Interages volunteers, Strongin, who is in her 60s, ‘‘was in the market for doing some volunteer work” three years ago when a friend recommended the program. Strongin had volunteered before, but took on administrative roles. This time she wanted to work with children one-on-one. The Interages program seemed perfect. ‘‘So I called immediately and offered my services,” Strongin said. Early beginnings Over the past 20 years, hundreds of volunteers like Strongin have enlisted in the Interages program, drawn by positive word-of-mouth and also by the same interest founder Austin Heyman had in connecting the generations through a variety of creative programs. ‘‘Seniors derive enormous benefit from connections with young people. They bring experience and wisdom, but they can also learn from the younger generation,” Heyman said. ‘‘Both generations are giving and receiving. I saw that happening and the need is only growing.” The program grew out of a county effort in 1986 to establish intergenerational programs, something in which Heyman and Charles Gilchrist, the county executive at the time, shared an interest, Heyman said. From that interest, the Montgomery County Intergenerational Resource Center was created, and Interages won the contract to operate it. As part of the center’s mission, the program hosted workshops, published a newsletter and gave technical assistance to organizations, individuals and schools that wanted to create intergenerational programs. It also created model programs, such as an intergenerational discussion program called Closing the Gap, which was implemented in home economics classes and worked to dispel stereotypes by focusing on family life, parenting and changes in marriage patterns, according to the organization’s Web site. Some programs ended over the years. But others, like Project SHARE, which brings children of all ages to adult daycare centers and assisted living facilities for shared activities, have continued. ‘‘The major change [in the past 20 years] is we’re helping more children and using more seniors,” Heyman said. ‘‘The more we can reach, the more we can help.” ‘‘We’re always looking for new programs,” said Barbara Newland, executive director of Interages for the past four years. ‘‘We’re in 25 schools and work closely with teachers and work with Linkages to Learning and the Boys and Girls Club. We listen to people when they say, ‘We need this.’” Debbie Sekuler, a second-grade teacher at Darnestown Elementary School in Gaithersburg, has been involved with Interages over the past 15 years, most recently in the past three years with Project SHARE, or Students Help and Reach Elders. Sekuler likes the program because Interages ‘‘[does] the footwork, the initial calls to find nursing homes that would allow kids to visit monthly,” she said. ‘‘We just provide the kids.” Heyman said the benefits for the seniors can be profound. ‘‘I went to a group home with second-graders and one of the residents there had been a teacher, but she had Alzheimer’s. Someone asked, ‘Can you read to these kids?’ And she did for five minutes. For five minutes she was her old self and everyone was astounded,” Heyman said. ‘‘We turned an assisted living facility into an education facility for those few minutes. ... When those moments come, you feel awfully good.” Challenges and success Interages faces the challenges of small nonprofits: finding funding, recruiting and retaining volunteers and providing transportation. In 1986, the program had a budget of $75,000 and two part-time employees. Today, Interages has a $385,000 budget and has a staff of nine, six of whom are part time. Funding comes from county contracts, corporate donations and individual contributions. While there are other nonprofits that offer mentoring and tutoring programs, Newland said there always will be competition. But she doesn’t see that as a drawback. ‘‘Everyone [who seeks funding for nonprofit organizations] is competing for money, and there [are] only so many foundations and donors. But if you’re doing a good program, you will find funding. So I don’t find that problematic.” Success is measured by evaluations from teachers, surveys, budget growth and participation. ‘‘We’re really proud that we’ve nearly doubled the number of children served” and continue to add programs, Newland said. ‘‘What has stayed true is the intergenerational piece, that’s very important to us,” Newland said. ‘‘I think, from my perspective, the neatest thing about this agency is that it’s been around for 20 years and working with children and seniors. That’s something to be proud of.” An ‘enlivening’ experience Strongin, a woman with a lot of life experiences to offer, chose the Intergenerational Bridges program. ‘‘I was a teacher at one time, so certainly those experiences in terms of anything that dealt with homework would be helpful. I have children and nine grandchildren, so I have a lot of experience with children, and I traveled a lot and have sensitivities to other cultural values, and that could be helpful to children from other cultures that have to adapt to another way of life [in America].” She also speaks Spanish, which is particularly useful this year as she mentors a girl from Mexico in a program that pairs newly arrived immigrant children in English for Speakers of Other Languages classes with mentors who help guide them through the transition to United States culture, language acquisition and personal development. ‘‘These children don’t have any historical experience with American culture,” Strongin said. ‘‘This is a good way to expose them to that and give them a taste of American culture they never had.” For Strongin, Interages offered an opportunity to allow her to share her knowledge while learning about culture. But more importantly, she said the program made her feel she made a difference in someone’s life. ‘‘I think I learned, or it reinforced a belief I had that a one-on-one relationship between older and younger people can be very rich and worthwhile both,” she said. ‘‘It’s very enlivening.”
posted by Allen |
Wednesday, May 10, 2006
Monday, May 08, 2006 We went to Richard and Helaine's last night for a bar-b-que with Sid, Linda and Susan. All of your buddies, Jake, Ari, Simon were there playing with Jack, Joe, Alex and Abby. It was a lot of fun for the kids and for the grown-ups. There was a lot of laughing. Everyone gets along so well. This is our family -- and your family.  Simon is still into Pokemon, can you believe that? Ari is beautiful. We threw the football for a long time and it made me feel really good. I love that kid. Jake is still an incredible athlete. I won't be surprised if he plays for the Nationals one day, but I think he is a big Astros fan. I remember when you and Jake played chess online when you weren't allowed to be around others. When I got up this morning it was rainy for the first time in a long, long time. I thought about the first time we went grocery shopping in Minnesota. We were staying at Steven's house. He was in Europe or somewhere. It was an awesome place -- right down the street from Sebastian Joe’s Ice Cream Café with its Brrr Bars. I realize that I think about Minnesota a lot. Certain times and places just pop into my head. I feel a need to listen to the Jayhawks, which is a Minnesota band. I get excited when I meet people from there. Lately I see stuff from the beginning of our stay there. I remember leaving Wisconsin and driving into St. Paul; I remember driving onto the campus of the University and learning there was a Dwight Yoakam concert about to start; and today I remember going to the Lund's grocery store on our second day in town and buying cereal and other stuff. it was raining. On my way to work I was thinking about all of this and about how perfect it was last night. I got very sad.
posted by Allen |
Monday, May 08, 2006
Sunday, May 07, 2006   We had a nice weekend. Baseball on Saturday - Jack hit a homerun - and another march on the mall on Sunday. We walked with other families to support a kid a JPDS who has juvenile diabetes. I was glad to see how many families turned out for the march. But at the same time I was sad to know that there would never be a "march" for Fanconi anemia. I said to Jack that it is crazy, but one of the problems with Fanconi anemia is that not enough people have it. You don't want anyone at all ever to have it, but you want there to be enough people to care, enough people to march, enough people to contribute money and enough people to try to find a cure. I read the Fanconi anemia newsletter last week and Dr. Wagner wrote that they are having more success with unrelated transplants in Minnesota. Again, it is great for everyone going to transplant now and in the future... but hard for me to read. I also saw this today. Wouldn't it be great if they can cure FA. There are only about 1,000 people in the entire world with it. No-one should ever have to go live with what you and they have lived with. No families should ever have to go through what we've gone through.  New Studies Give New Hope for Rare Disease Study, Funded by the National Institutes of Health, Will Research Over 20 Conditions May 7, 2006— - In the next few months, the National Institutes of Health will launch over 20 new studies into rare diseases at about 50 sites around the United States and in other countries. A rare disease is defined as a disease or condition that affects fewer than 200,000 people in the United States. By studying such rare diseases as genetic steroid defects and pediatric liver disease, researchers hope to develop more treatments and drugs for patients who might otherwise be overlooked by the medical and pharmaceutical community. At first glance, you would never know that 2 1/2 year old Erick Benitez nearly lost his life when he was just three days old. Erick suddenly fell into a coma and suffered mild brain damage. Doctors soon discovered that Erick had a rare urea disorder, a genetic condition where the body lacks the enzymes necessary to break down protein into urea and excrete it in urine. The disorder is so rare that it affects only one in 100,000 infants. "There is no newborn screen for urea cycle disorders in the same way there is for a number of other rare disorders" said Dr. Mark Batshaw of Children's National Medical Center. "So, we have to wait until the child becomes ill before we can actually make a diagnosis." New Hope Twenty-five million Americans suffer from rare diseases, about 6,000 of which have been identified like Rett Syndrome, a childhood neurodevelopmental disorder which almost exclusively affects females; Giant Cell Arteritis, an inflammation of the lining of the arteries; and cystic fibrosis, a genetic disease that causes life-threatening lung infections. "The aggregate number sounds in fact quite large, but when you break it down into many different diseases, thousands of them, there are only a few hundred in each category, so there hasn't been any incentive for the drug company to study these," said ABC News Medical Editor, Dr. Tim Johnson. "There's no real profit and the only way for it to happen is for the federal government to put in research." But now researchers say by testing new drugs in these federally-funded clinical trials, new treatments may be possible -- giving hope to many families. "One of the unique things about rare disorders is you never know where the research is going to go," said Dr. Stephen Groft the directory of National Institutes of Health's Office of Rare Diseases. "So, it is not too unusual for the findings in rare diseases to be applied to the more common disorders and vice versa." Batshaw is optimistic the new clinical studies will help Erick -- a young boy with a bright future. "It's possible that we will develop a better medication so that you'll have to use less of it," he said to Erick's mother. Within the next five to ten years Batshaw hopes to develop a test to screen all newborns for urea cycle disorders so no child suffers brain damage or dies from the condition -- a goal now closer than ever with the new clinical studies. For more information on rare diseases visit the NIH Web site the National Center for Research Resources Web site and the Rare Diseases Clinical Research Network Web site. ABC News Medical Editor, Dr. Tim Johnson, originally reported this story. Copyright © 2006 ABC News Internet Ventures  This was you early in your baseball career. You were very cute. If only that career was starting now, not in 1995.
posted by Allen |
Sunday, May 07, 2006
Thursday, May 04, 2006 I got a really nice note from Barry and his mom. I will make sure that I see him at some point. Maybe we can swing by Montana when he is back home and better.  We got a message about a kid who got a gift from Hope for Henry. She died and the parents want to make sure there are no photos of her on the hospital's website or our website. I find that really interesting because it is the opposite of how I feel about you. All I want are pictures of you everywhere for everyone to see. I want people to know about you and to hopefully love you like I did. Last weekend I actually sat there and stared a a couple of photos of you that are on the desk in our bedroom. I realized that I kinda pass you by all day but never take time to look into your face and to look at your smile. It is like how we live in Washington, DC and don't look closely at the monuments or the White House or any of that stuff. We are so used to seeing it and it being a part of our lives we don't get so "wowed" by it anymore. It was nice to study your face. I just started a book about childrens' heart surgeries and the doctors that perform them. I was on the first page and all of a sudden I started to see the scar that ran down your chest. I couldn't get past that first page. It felt good to remember that scar even though I had tears in my eyes.
posted by Allen |
Thursday, May 04, 2006
Wednesday, May 03, 2006 Mom put her new camera to good use. Check out the pictures she took.  Jack helped out with the XMKiDs broadcast from the new roller coaster. He supplied facts about Disney World on the air and helped produce the programming. I was very proud of him.  Being in Disney World was great, and being there with my friends from work, Mindy, Kenny and Jim made it even more special.  This is Mindy, Jack and me on the new roller coaster. It is called Expedition Everest.  Jack got to meet some of the stars from the shows on the Disney channel on TV. He was very psyched and I was excited for him.  Joe LOVED the characters. He wasn't scared of them. He was very into Chip and Dale. I didn't know which was Chip and which was Dale. Joe got their autographs about 20 times. We went to the same character meals that you liked so much. Remember how frightened Jack was of the characters. Remember when Tigger chased him down.  Mom may have had the most fun of all. I think she felt good watching Jack and Joe enjoy themselves so much.  As for me, I thought it might be hard to go back to Disney World for the first time without you. It wasn't. We had a lot of fun. I thought about you at different spots in the park where we were together on previous trips. You were very sick when we were there last, and I remembered a lot of that. I think our best trip must have been the one when we went there with Make-A-Wish. Mom met a girl today at Johns Hopkins Hospital who is going with her family to Italy through Make-A-Wish. That'll be something.
posted by Allen |
Wednesday, May 03, 2006
There are a lot of things that have happened so far this year that I haven’t talked about with you. Nothing too important. Just stuff. Here is some of it. I will put some pictures in now and try to fill in the details later. Hopefully I will get back to writing you more regularly. I have scraps of paper piling up all over the place with notes of stuff that I want to tell you. I guess a good place to start is Jack's birthday. I got him a present that a lot of people wanted but had a hard time getting their hands on during Hannukah and Christmas. It is probably both a good an hard thing having your birthday smack dab in the middle of the holiday season.  You can see how psyched he was. Also in January, Mom and I went to Las Vegas for my work. We saw Cal again and met Derek Jeter.  Then in February, Mom and I went on vacation with Rich and Helaine. This is a picture of me at the beach where we went in the Carribean.  I took this picture of a catepillar who was crawling up the side of the place we were staying. It was HUGE and very beautiful. Remember the catellipars they have at Politics and Prose. They were neat.  In March, your brothers and I went up to Cooperstown to visit the Baseball Hall of Fame. My friend from work, Lee, has a plane and was nice enough to fly us up there.   There were no Starbucks, GAPs or even malls in Cooperstown which is odd, but really, really nice. They did have a couple of stores that sold baseball bats. Joe and Jack both got ones and they were personalized with their names and they also say "Future Hall of Famer."  Also in March we all went up to New York City for a wedding. For a change of pace we took the train together with Nana and Papa Sy.  The guys had a good time. A woman left her bag on the platform and the train took off without it. That caused a lot of excitment.  We went to the NBA store and the guys got shirts. Joe got Shaq's and I think Jack got Kobe Bryant's. I remember that my friend sent you Kevin Garnett jerseys when you were in transplant. They were a little big. It was appropriate beause KG plays for Minnesota and we were in Minneapolis. Joe wears your Michael Jordan Wizards jersey all the time.  Mom and I had a good time at the wedding. It was wacky. There was a sword and a dog in the ceremony. It was definitely different than any wedding we will ever go to. Joe and I went to the slide that you and Jack love so much in Central Park. There were 3 Henry's on the slide with Joe. I guess it is a popular name. Mom and Jack were over at the zoo while we slid. Joe didn't want to use cardboard.   April 4 was Mom’s birthday. As always I had a "grand plan." But unlike last year's Photo Booth, I wasn't able to pull of this year's gift as I had planned. My idea was to make a book of photos to give her. The photos were all of the ones I could find of just you and her. I found almost 70. I scanned them all in but couldn't get the book made just then because of something technical. Basically I screwed up. So I got her a really nice camera instead. God, I wish we had digital cameras back when you were born. What I have done is put all those photos of you and her on a electronic picture frame Mom has on her night table so she sees them as a slide show.  Mom got the camera just in time to use it on a trip to... Disney World! We all went to Disney World for my work for the grand opening of a new roller coaster. I do have an amazing job.  After we came back from Florida I went back to Las Vegas for work. This time I did something I never have really done there before. I went outside. And outside in Las Vegas is really cool. There are mountains all around the town.   I hiked up one of the mountains. It was in a place called Red Rocks. I thought about you a lot while I hiked. It was good to be alone. I thought the usual thoughts about how sad I was that you never saw anything as beautiful as Red Rocks, but I also just thought a lot about how much I miss you. All of us went to St. Louis for Passover, and then Cousin Hannah and Aunt Jen came here to go with us to a rally on the Mall to try and help people in Africa who are getting killed. We met up with other people who came in from St. Louis. A lot of babies and boys and girls are dying in a place called Darfur. I hope Jack and Joe learn about the need to help others in trouble, no matter who they are or where they live.    We also went with Aunt Jen and Hannah to the cemetery. We visited your grave, Grandma's grave, Aunt Ida and Uncle Ben's graves and Mommy's grandparent's graves. We have lots of people to visit. Hannah did what Mom and I do. She laid down on the grass on top of your grave. I saw a picture in a magazine of a Mom who lost her son in the war in Iraq. She was laying down on top of the grave. A lot of people just stand and look down. I understand the need to lay down and be as close as possible. I remember laying with you in your hospital bed and your bed at home. I miss that. At night I sit on one end of Jack's bunk bed and read while he is tucked in at the other end reading too. We sit like that until it is time for lights out. Mom is usually in bed with Joe reading to him. I like that time with Jack even though we aren't talking.
posted by Allen |
Wednesday, May 03, 2006
|
|
|
|
|
|
|
 | ||||
| |||||