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Susan Alasandro has been teaching my girls piano for many years now. She has instilled a love of music in them that will last a lifetime. We absolutely adore her and our hearts hurt for her daughter who is suffering from a very rare disease called Cystinosis. Susan is not one to ask for help so I'm going to ask for her! Please help her and her daughter with these tremendous medical bills that are piling up. Any little bit helps as do prayers. Here is what Susan has to say about her amazing daughter:
My daughter Kristen was diagnosed with kidney disease (FSGS) when she was 8 years old. She received a kidney transplant in 2006, when she was 13. Unlike most kidney transplant patients who go on to live relatively normal lives, Kristen’s health was never good. We just recently found out about 8 months ago that the reason she has never been able to lead a healthy life is because she was misdiagnosed 18 years ago! The disease diagnosis is Cystinosis. This is a very rare disease that affects only about 600 people. Cystinosis attacks every major organ in the body including kidneys, eyes, lungs, heart, and liver. Cystine levels crystalize in the organs until they no longer function. As of right now her lungs are compromised and her eyes. There is no known cure and the medication to slow the progression is expensive! Her eye drops alone are $1,000 per month. The hospital has tried to help us and has contacted the manufacturer, but that was 4 months ago and there is no response! So she has been without eye drops that she needs to take 9x per day! Kristen is now 26 and has suffered through many physical setbacks. She was diagnosed with a cancerous tumor on her transplanted kidney (her only kidney) last year. Daily nausea and vomiting, migraines, massive weight loss,have become an every day scenario. We have spent more time in hospitals over the years than we could ever count. Because of this health crisis she has also suffered from depression and anxiety. She has tried to be independent and work, however she is not employed at this time because of her health. It has fallen to us, her parents, to support her. Her medical expenses over what insurance has paid is already in the thousands. Her prescriptions for Cystinosis (including her eye drops) and her anti-rejection meds are about $1,500 per month. All living expenses are being covered by us at this time (Insurance, groceries, gas, car, prescriptions, co-pays, etc) so she has the best chance of recovering her health. She is working hard to get well and wants to be independent. We are trying to provide her the care she needs to get back on her feet. She is one of the strongest young women I know! If there is a way, she will get back up again. However, at this time it has become a financial hardship for us. The debt is piling up, and at this time, I don’t see a way forward. I have never done something like this and it is hard to ask for help. I just don’t see an alternative. We need help! I assure you that all funds donated will be used for medical, and financial support for our daughter! If you can’t support us financially, prayers are appreciated. Thank you!
Lisa Brown
&
Susan Alasandro
My daughter Kristen was diagnosed with kidney disease (FSGS) when she was 8 years old. She received a kidney transplant in 2006, when she was 13. Unlike most kidney transplant patients who go on to live relatively normal lives, Kristen’s health was never good. We just recently found out about 8 months ago that the reason she has never been able to lead a healthy life is because she was misdiagnosed 18 years ago! The disease diagnosis is Cystinosis. This is a very rare disease that affects only about 600 people. Cystinosis attacks every major organ in the body including kidneys, eyes, lungs, heart, and liver. Cystine levels crystalize in the organs until they no longer function. As of right now her lungs are compromised and her eyes. There is no known cure and the medication to slow the progression is expensive! Her eye drops alone are $1,000 per month. The hospital has tried to help us and has contacted the manufacturer, but that was 4 months ago and there is no response! So she has been without eye drops that she needs to take 9x per day! Kristen is now 26 and has suffered through many physical setbacks. She was diagnosed with a cancerous tumor on her transplanted kidney (her only kidney) last year. Daily nausea and vomiting, migraines, massive weight loss,have become an every day scenario. We have spent more time in hospitals over the years than we could ever count. Because of this health crisis she has also suffered from depression and anxiety. She has tried to be independent and work, however she is not employed at this time because of her health. It has fallen to us, her parents, to support her. Her medical expenses over what insurance has paid is already in the thousands. Her prescriptions for Cystinosis (including her eye drops) and her anti-rejection meds are about $1,500 per month. All living expenses are being covered by us at this time (Insurance, groceries, gas, car, prescriptions, co-pays, etc) so she has the best chance of recovering her health. She is working hard to get well and wants to be independent. We are trying to provide her the care she needs to get back on her feet. She is one of the strongest young women I know! If there is a way, she will get back up again. However, at this time it has become a financial hardship for us. The debt is piling up, and at this time, I don’t see a way forward. I have never done something like this and it is hard to ask for help. I just don’t see an alternative. We need help! I assure you that all funds donated will be used for medical, and financial support for our daughter! If you can’t support us financially, prayers are appreciated. Thank you!
Lisa Brown
&
Susan Alasandro
Organizer and beneficiary
Susan Hissey Alasandro
Beneficiary