I would like to share a personal story about the positive effects of research. My husband Bill has a muscles disease call VLCAD. You may be wondering how his muscle disease has anything to do with children and research. Well, 13 years ago while climbing Mt. Saint Helens Bill was airlifted to St. Johns Hospital after suffering from an episode from his illness. At that particular time he did not know he had a disease. He was a state swimmer in high school, a United States Marine who served his country, and an avid runner. While in the service he was given IV's after strenuous activity, his urine would turn dark brown a sign of dehydration. The problem with that was he was not dehydrated his muscles were breaking down and all of the "junk" from his ripped muscles were going through his body damaging his liver and kidneys.
After many doctor's appointments one doctor from Kaiser remembered hearing about a childhood disease called VLCAD and sent Bill to a children's hospital in Portland Oregon called Dornbeckers located at Oregon Health and Science University. Bill was tested and sure enough he was diagnosed with a childhood disease that children die from at birth and while sleeping. Bill’s disease was often mistaken for stillborn deaths or Sudden Infant Death Syndrome.
Bill is currently a part of a research project. The research will last for three years. Last spring he stayed at the hospital for 5 days running tests including physical tests, full body scans, blood tests, and so on. He now takes “medicine” that helps him process long-chain fats. Part of the subjects in the study take medicine that they know helps and some take medicine they think will help more. None of the subjects know which they are taking. The hope is that the drug being tested will work to help people that suffer from the painful disease VLCAD.
Research helped the doctor’s understand that people live with VL-Cad, that there is medicine to help, and that children that have VLCAD do not have to die from the stress of childbirth or kidney failure in their sleep. Bill had to suffer through some tests and experience pain from slight muscles breakdown however the risk was worth the benefit. The outcome of the research project may be positive for children with VLCAD.
Josie Zbaeren
Thank you for sharing your husband's story. What a perfect example of the importance of research and the the benefits of it versus risks.
ReplyDeleteI wish your family the best in the process.
Hello Josie,
ReplyDeleteWow, what a great story to share. I hope that the medicine is working for your husband. It is great that children can look to him and know that they have a future!! Research does have it's place and it is wonderful that people are willing to go though the pain and anxiety of the experience. I will pray for you and your family.
Josie,
ReplyDeleteThanks for sharing your personal story. I think this research is beneficial for others, and I think it is great that he is willing to participate in this to help others and himself. This is a super example! I pray that the medicine helps him!
On a side note...Kaiser, OR? I have family there...It's a small world!
Thanks so much for sharing. I would imagine that most of us feel thankful that Bill is willing to be part of such a project and know that the future is brighter for many because of his sacrifice. This is such a great example of sacrifice and the greater good.
ReplyDeleteWow Josie, what a great example of the positive effects of research for children! Thanks for sharing Bill's story! It again is a perfect example of enduring pain for the greater good! You can tell Bill how impressed we all are with what he is doing to help with research in this area! I hope this research is successful and Bill and others will find relief for the pain caused by this disease! Delores
ReplyDelete