My Fight Continues – Pat Gibilisco – Pt. 3
Part 3: My Fight Continues – Pat Gibilisco
Money was the only reason my child was not able to receive the drug that would potentially save her life. The Snow Foundation, or I should say Stephanie Gebel, worked so hard to raise money for all children affected with WS. She had to beg people, year after year, to continue to support the WS Foundation. I can tell you that was not an easy task! She had some support from the other families with WS, but not enough. Some families felt it was just too hard to ask for contributions. For 18 years, I have done everything I could to fight for all WS children. I repeatedly asked my family and friends to help me save my daughter. They were so generous in their efforts to help me find a cure for WS. Now I have to say that as much as I so appreciated their love, support and financial assistance, it was just too late. The father from Utah also lost his five children afflicted with WS.
Why does money always stands in the way of a cure? Could we have had more help from our WS group? Absolutely. I can tell you that the Snow Foundation has fought for ALL the WS children. Stephanie Gebel has fought to save her child’s life and every other family’s child. Dr. Fumi, Dr. Naseer, Dr. Hershey, Dr. Hoekel, Dr. Marshall, Dr. White, Dr. Paciorkowski, Samantha, Beth, Cris, and all the other medical professionals and staff have fought hard to save our children.
Am I mad? Yes. Am I bitter? No. Would I have done anything differently? No. It all comes down to money. Now it is too late for a drug to save my daughter. We started this fight 18 years ago, and it was ending for my daughter. No more clinical trials and no more clinics. My daughter is now totally blind and almost deaf, and she has bowel and kidney problems, seizures, choking episodes, heat intolerance, poor balance, Diabetes, Diabetes Insipidus, short-term memory loss, and many more issues that she deals with daily. All the while though, she has such a smile on her face and soul. Lauren and all the other past and present WS children are the real heroes. They are amazing kids.
For a fourth time, I will cry. It will be at her funeral. It will happen. Nothing can stop the clock from ticking. I can tell you I will NEVER quit until a cure is found. I will continue the fight so no other family has to go through the heartache I have. Please, I beg you, continue to fight the fight. Do not let money come between your child and a cure. We must save all the WS children. I don’t want another family to watch their child slowly die from the inside out. It is brutal to watch.
I am honored and humbled to be able to say that I was fortunate enough to be a part of Lauren’s precious life. As a young child I was her and her sister’s day care provider. Lauren was always very eager and happy to help out with anything she could and did so with a smile! Not a day goes by that I don’t think about her and say a prayer. She has made my world a better place – I just need to let her know that. As for her parents and sister, they are the most ambitious, kind hearted, and giving people I know. I love you guys more than you will ever know!!