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Wednesday 23 July 2025 14:53:44 GMT
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Alyssa Jane Manfredonia fought hard from the age of 9 yeard old, when she was diagnosed with brain cancer, to the age of 15, when brain cancer took her life. The last few months of her life, she sat in a swollen, painful state, where she could hear and understand everything, but couldnt speak, move, or see. My sweet baby cousin… I was there for her birth and I held her hand while she took her last breath.  On the 18th of this month, it’ll be one year since her death. Nothing has changed in the last year with pediatric cancer funding. It is still at 3-4%. That’s roughly $200 million annually that our country puts towards pediatric cancer reseach. If you didnt know that - now you do.  Now the kicker… Alyssa was the only child who was put into remission during a clinical trial. They determined that the deug she was on was a “miracle drug for her.” Fast forward a few years into her remission, she was rediagnosed, and when we advicated for her “miracle drug,” we were told she COULD NOT HAVE IT BECAUSE SHE WAS THE ONLY PERSON THAT IT HELPED. They didnt care to save one single life of a child with a drug that has cured her before. Disgusting. I’ll never be okay with that. It keeps me up at night.  Please spread the word. Our children need this. I didnt think it could ever happen to someone I love until it did and now I have to have coffee dates with a headstone.  #pediatriccancer #braincancerawareness #cancerfunding #alyssajanemanfredonia #alyssamanfredonia #livelikealyssajane #livelikealyssa #endpediatriccancer
Alyssa Jane Manfredonia fought hard from the age of 9 yeard old, when she was diagnosed with brain cancer, to the age of 15, when brain cancer took her life. The last few months of her life, she sat in a swollen, painful state, where she could hear and understand everything, but couldnt speak, move, or see. My sweet baby cousin… I was there for her birth and I held her hand while she took her last breath. On the 18th of this month, it’ll be one year since her death. Nothing has changed in the last year with pediatric cancer funding. It is still at 3-4%. That’s roughly $200 million annually that our country puts towards pediatric cancer reseach. If you didnt know that - now you do. Now the kicker… Alyssa was the only child who was put into remission during a clinical trial. They determined that the deug she was on was a “miracle drug for her.” Fast forward a few years into her remission, she was rediagnosed, and when we advicated for her “miracle drug,” we were told she COULD NOT HAVE IT BECAUSE SHE WAS THE ONLY PERSON THAT IT HELPED. They didnt care to save one single life of a child with a drug that has cured her before. Disgusting. I’ll never be okay with that. It keeps me up at night. Please spread the word. Our children need this. I didnt think it could ever happen to someone I love until it did and now I have to have coffee dates with a headstone. #pediatriccancer #braincancerawareness #cancerfunding #alyssajanemanfredonia #alyssamanfredonia #livelikealyssajane #livelikealyssa #endpediatriccancer

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