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We lost someone very special yesterday


MrsTaborJet

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Samantha left us yesterday, she was only 17. Sammy, as she was fondly known, suffered from an incredibly debilitating illness called Alstrom Syndrome. It is a very rare disease which has affected about 300 people worldwide. From birth she endured many catastrophic events... congestive heart failure, liver disease, kidney failure, diabetes, renal failure, skin disorders, scoliosis, asthma and lung disorders, blindness, deafness, weight gain. She required constant medical care and had a team of doctors overseeing her care.

She was a beautiful child who loved cheeseburgers, unicorns and Harry Potter. She was the most inquisitive child I ever knew and could tell you all about Yu-Gi-Yo, even when you didn’t want to hear about it. She wanted to know you and she wanted to be known. She wanted to understand and wanted to be understood.

Her engaging personality and inquisitive mind were the only things that didn’t seem to be affected by her illness. And this is what I will always remember about Sammy, that she knew she was different, but acted like it was just the way it was. She accepted her life much easier than it was for the rest of us to accept what was happening to her.

I cannot imagine what it must feel like to bury a child; there are no words of comfort that can be said to minimize the pain. There is no way to ease her younger sister’s loss. They are amazing parents who loved Sammy and sacrificed everything and gave her the best life she could have.

She was not meant to be in this world long, but she exceeded doctor’s expectations and lived well beyond others afflicted with this syndrome.

Thanks for reading.

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Samantha left us yesterday, she was only 17. Sammy, as she was fondly known, suffered from an incredibly debilitating illness called Alstrom Syndrome. It is a very rare disease which has affected about 300 people worldwide. From birth she endured many catastrophic events... congestive heart failure, liver disease, kidney failure, diabetes, renal failure, skin disorders, scoliosis, asthma and lung disorders, blindness, deafness, weight gain. She required constant medical care and had a team of doctors overseeing her care.

She was a beautiful child who loved cheeseburgers, unicorns and Harry Potter. She was the most inquisitive child I ever knew and could tell you all about Yu-Gi-Yo, even when you didn

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Samantha left us yesterday, she was only 17. Sammy, as she was fondly known, suffered from an incredibly debilitating illness called Alstrom Syndrome. It is a very rare disease which has affected about 300 people worldwide. From birth she endured many catastrophic events... congestive heart failure, liver disease, kidney failure, diabetes, renal failure, skin disorders, scoliosis, asthma and lung disorders, blindness, deafness, weight gain. She required constant medical care and had a team of doctors overseeing her care.

She was a beautiful child who loved cheeseburgers, unicorns and Harry Potter. She was the most inquisitive child I ever knew and could tell you all about Yu-Gi-Yo, even when you didn’t want to hear about it. She wanted to know you and she wanted to be known. She wanted to understand and wanted to be understood.

Her engaging personality and inquisitive mind were the only things that didn’t seem to be affected by her illness. And this is what I will always remember about Sammy, that she knew she was different, but acted like it was just the way it was. She accepted her life much easier than it was for the rest of us to accept what was happening to her.

I cannot imagine what it must feel like to bury a child; there are no words of comfort that can be said to minimize the pain. There is no way to ease her younger sister’s loss. They are amazing parents who loved Sammy and sacrificed everything and gave her the best life she could have.

She was not meant to be in this world long, but she exceeded doctor’s expectations and lived well beyond others afflicted with this syndrome.

Thanks for reading.

So sorry for your loss Mrs T. May she RIP. Thoughts and prayers to her friends and family. :cry:

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My condolences. Was she a relative or a friend?

Brother in-law's niece.

Sammy was a special girl. Very selfless, always curious, and extremely outgoing. For someone born with the physical limitations she had, she wasn't one to complain about it, and she made the most of what she had.

A very bright light went out when she passed.

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Thank you everyone for your kind words. Truly, it is appreciated.

As Tabor mentioned, Sammy is the niece to my brother-in-law and I've known her for little over 10 years now. Mostly saw her at lots of summer picnics, family get togethers and holidays. She commanded lots of attention, but we didn't mind giving it to her.

She's in a better place, pain free, and in time her parents and sister can move toward a different, yet new life, never forgetting the love she gave and role she played in all our lives.

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