Luvbills Posted January 17, 2005 Share Posted January 17, 2005 Just want to tell all the Wallers that next week's show will hold a special place in my heart as well as anyone across this country who has ever heard of Jim Kelly (football Hall of Famer) or donated money to his foundation "Hunter's Hope." I have volunteered for them since Hunter was about a year old...he turns 8 on Valentine's Day (his daddy's birthday also). Hunter has a rare genetic disorder (Krabbe Leukodystrophy) that effects the mylein in his brain. Anyhow, this family in CA (Martinez to be exact) has a teenager who was diagnosed over a year ago. She also lost an infant cousin to the same disorder. Jhyrve has the adult/later onset. She had a stem cell (cord blood) transplant and is 100% engrafted. She could NOT go home for almost a year because the house is full of mold and allergens. A close friend nominated them for this show. So here's my plea! Please watch ABC's January 23, 2005 8PM (eastern time) TV Show...Extreme Home Make Over. One of our "Special Transplant Kids" is the feature. Bring lots of Kleenex. Hopefully anyone asking the questions, "WHY should I donate and support Hunter's Hope?" will get their questions answered. Hunter's Hope has literally paid the daily living expenses for this family for the past 9 months. Jim Kelly had a private plane take them from Duke Medical Center, in North Carolina, to their home in California. Remember if it were not for Jim Kelly's name and fame, there would be no help and certainly no awareness of Krabbe Disease. Jim has literally saved 26 lives in the past few years. This number of transplants also includes three from Europe. Yes, we have lost a small number of transplanted children. Not because of not trying, but because they were transplanted too late. Because of Jim's and Hunter's Hope/Universal Newborn Screening (our new green bracelet) effort, beginning in 2005, New York State will now test for 42 diseases at BIRTH..It was 11 in 2004..... The Test for Krabbe Leukodystrophy is now a reality..The State of Wisconsin and New York State will soon start testing for all Leukodystrophies. So please check out Jhryve's caringbridge site and the Hunter's Hope site. http://www2.caringbridge.org/ca/jhyrve/ www.huntershope.org If newborn screening had been available to her, she could have been transplanted shortly after birth. If it had been available to many of our Krabbe kids, they would be alive. Unfortunately, the children who are detected at birth had to lose a sibling first! Link to comment Share on other sites More sharing options...
scribo Posted January 17, 2005 Share Posted January 17, 2005 I'll tape it and watch it after the the AFC Championship game. Great cause, no doubt. Thanks for the info. Link to comment Share on other sites More sharing options...
mead107 Posted January 17, 2005 Share Posted January 17, 2005 good post Link to comment Share on other sites More sharing options...
Luvbills Posted January 17, 2005 Author Share Posted January 17, 2005 BUMP....wish the AFC game was on earlier!! Link to comment Share on other sites More sharing options...
stevestojan Posted January 17, 2005 Share Posted January 17, 2005 BUMP....wish the AFC game was on earlier!! 209090[/snapback] dont worry... about 70% of us have Tivo... it will get watched Link to comment Share on other sites More sharing options...
kegtapr Posted January 17, 2005 Share Posted January 17, 2005 Best show on TV hands down. I'll be watching. Link to comment Share on other sites More sharing options...
aussiew Posted January 17, 2005 Share Posted January 17, 2005 Absolutely. Link to comment Share on other sites More sharing options...
bill in Livonia Posted January 18, 2005 Share Posted January 18, 2005 I'll watch it! Your dedication is really admirable. Link to comment Share on other sites More sharing options...
Luvbills Posted January 18, 2005 Author Share Posted January 18, 2005 I'll watch it! Your dedication is really admirable. 209262[/snapback] Thanks! We were fortunate to have a special child (my first niece) in our lives for 2 1/2 years and this is our family's way of giving back! Link to comment Share on other sites More sharing options...
Luvbills Posted January 21, 2005 Author Share Posted January 21, 2005 BUMP....don't forget to watch! Link to comment Share on other sites More sharing options...
Billsjunkie Posted January 22, 2005 Share Posted January 22, 2005 Bump Link to comment Share on other sites More sharing options...
udonkey Posted January 22, 2005 Share Posted January 22, 2005 Any idea if Jim will be making a cameo? Link to comment Share on other sites More sharing options...
Luvbills Posted January 23, 2005 Author Share Posted January 23, 2005 Any idea if Jim will be making a cameo? 214600[/snapback] Maybe since he got the private jet to take the family home. Link to comment Share on other sites More sharing options...
Zona Posted January 23, 2005 Share Posted January 23, 2005 My family and i watch that show every week. We will be watching this week as well. Thanks for the info.... Link to comment Share on other sites More sharing options...
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