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help for my baby getting surgery

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Hi I wanna tell you all a little bit about my life. At the age of 8 I was diagnosed with chronic pancreatitis and a few years later they found out I had a rare form of cystic fibrosis. So I have been in and out of the hospital about 1000 times and in 2009 I had an auto islet transplant that did nothing but make things worse including so many complications and still the same symptoms from the pancreatitis and I became a type 1 diabetic. But my dream came true in 2011 when I was blessed with my beautiful baby girl! She was everything I ever wanted! Watching her learn and grow is amazing. When she was about 5 months old my dad made a comment about her standing weird on him and I honestly blew it off thinking she was just learning. But when she started walking a little after her 1 st birthday and I noticed she was pretty clumsy but I'm her mom and totally clumsy so I didn't think much of it. But by 18 months I started telling her doctors she was falling more than other kids her age so I took her to children's hospital of Pittsburgh Orthapedic and she had 3 MRIs that diagnosed Sophia with Trevor's disease which is a 1 in a million disease that effects 2/3 times more in boys than girls and instead of letting your cartridge grow smooth like it should it takes 1 side and 1 limb and grows around the bones causing less and less movement and more and more pain as she grows. Her 3rd MRI showed her disease has progressed so much in just a year that it is wrapped from the front to the back of the right side of her pelvic bone, it's on both sides of her knees, and there is a huge dysphasia on her angel that is turning her foot and loosing muscle in her leg because she walks on her tippy toes when she can walk but she gets tired easy and asks to be held often so after appealing our denial from her insurance she was approved to go to philly and see the only doctor that has any experience with this disease and she is going to need surgery and I need some help so I can afford to stay up in philly with my daughter the whole time which we don't know how long till the surgery and recovery starts but we go up to September 3 and find out more about it but just to eat and drive there and afford to live up there I can't do on my own. Please if you have any way to help with expenses even the ones I'll have to pay for that are down in Pittsburgh while we are in philly it would all be so appreciated!i have the most amazing wonderful baby girl in the world and I will do anything to help her like my mother did for me! Thank you for taking the time to read!


Organizer

Ciara Michele
Organizer
Pittsburgh, PA

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