Some of you may know my friend, Jon VanHoose, and his wife Clarissa. His daughter, Elanor, was born almost two years ago. Her first year brought a few unexpected problems, especially with low weight gain. Last year, after many tests, she was diagnosed with Cystic Fibrosis (CF).
I was not very much aware of CF before I found out about Elanor. I have found out a few things since then: It is genetic, so there is no cure. However, gene therapy may someday provide a true cure. The median age of survival for a person with CF is 37 years. CF causes the mucus of the body to be too thick. You may think that mucus is just a nose thing, but it is also very prominent in the digestive system and the lungs, so CF patients often have digestive and respiratory problems. A common problem is that a cold or flu will settle into the lungs and stay there for the rest of the patient's life. Often ending that life.
This has been a heavy burden on the VanHoose family, but one that they have taken well. Jon wrote to me once that they could not wish that Elanor did not have CF, because it is genetic. It is a part of who she is. To take it away would be to make her another person, and they would not trade her for anything. Not even a potentially full life with a different daughter.
I thought I understood him at the time, but since then Maxine has come into my life. Now I do truly understand.
I've never met Elanor in person. The last time we met Jon and Clarissa "they" were pregnant, so Elanor was only sort of visible in silhoutte. But Jon is my friend, and my love for him extends to his family.
No one can say for sure what Elanor's future will be. Treatments have improved since CF's discovery in the 1930's, and life expectancies are increasing. Still, Elanor does not now have a normal life, and is likely to be different from other children her age for some time. She has spent a large portion of her life in the hospital, taking more injections than I would wish on anyone. Catching a cold is not just an inconvenience for her: it is a threat to her life.I'm not writing this to ask for sympathy for Jon and his family. I am asking that you do something. I am asking that you join me in praying for them, for strength and health, and for God's grace to be on them all. And I am asking that you consider helping financially.
This Saturday (May 20th, today in Korea) they will be participating in Great Strides, a fundraising walk for the Cystic Fibrosis Foundation. They are doing pretty well with their fundraising so far. Actually they've passed their goal by more than 400%. Still, I encourage you to make a contribution. You can do so at this page:
http://www.cff.org/great
The deadline is around June 20th, and the link to donate at the bottom of the page connects you to a secure link for entering credit card information.
This is what Jon wrote to me:
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As many of you know, our daughter Elanor was diagnosed last year with cystic fibrosis. This month, our family will be participating in the Cystic Fibrosis Foundation'’s "“Great Strides"” fundraising walk on May 20. Cystic fibrosis is a severe, life-shortening genetic disorder that affects about 30,000 people in the US. Ongoing research and clinical advances over the last several years have had a great impact on the lives of those with CF, both extending life expectancy (now into the 30s) and improving quality of life. The CF Foundation has been a major force in these advances, helping to set clinical standards, providing funding, and coordinating research.
If any of you are interested in helping sponsor "“Team Elanor,"” contributions can be made electronically at the following web page. We would appreciate any amount you might choose to give.
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He feels funny asking people to give, but I don't. This is not giving money to Jon or his family. This is giving money to an organization with a track record for helping people survive and searching for better treatments and a cure.
Once again, you can simply click on the title of this post, "Help Elanor", to connect directly to the CFF page for Team Elanor.
Peace,
Rob
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