Give Addie her wish

Hello everyone, my name is Ally and I am trying to raise money to buy my daughter Addie a backup wheelchair for school.

About Addie: Addie is 7 years old and a one in a million kid! I know everyone says that about their child but Addie has a disease so rare, she is quite literally one in a million. In November of 2020 Addie had a lengthy hospital stay at children’s where she was seen by neurology, pathology, infectious disease, oncology, and rheumatology. During this stay she had numerous MRIs and x-rays, countless blood tests (which resulted in 12+ needle sticks), a handful of different medication trials, IVs and even a bone biopsy. After all of that it was determined she has Chronic Recurrent Multifocal Osteomyelitis or CRMO. In short CRMO leaves lesions on her bones. These lesions are spots of inflammation that cause pain, weakness, stiffness and so much more. At the time of her admission Addie was in so much pain she couldn’t sleep, she walked hunched over and wobbly like an elderly person, she could not use stairs or go to the bathroom without assistance, we couldn’t change her clothes or brush her hair without her screaming in pain. It was the hardest thing I’ve ever had to witness. Unfortunately CRMO has no cure and with it being so rare there are only a handful of “treatments” which are used mostly for pain management. At first she was on prednisone, naproxen and biweekly Humira injections. The Humira did not eliminate the pain but instead caused her to get psoriasis on her scalp so bad that it resulted in multiple large bald spots. After stopping Humira we did Pamidronate infusions every 3 months and her final dose was this January. This helped but not enough. She has gained new lesions which are causing more pain in spots she did not have pain before.Due to this Addie has a wheelchair that she is not bound to but does use often especially at school. She is limited in her mobility so she needs the wheelchair to walk long distances and some days just to get around because walking is painful after so long and it wears her out. This year we have sent her to and from school on a handicap accessible bus where she is in her wheelchair the whole time.

we are now looking to purchase a second wheelchair but a more basic one that we can leave at school all year to eliminate the need for specialized transportation. Addie has had such a hard first year of school due to bullying because she is a bit different. She begs to be like the other kids and do what they can do. Unfortunately there is only so much we can help her with that. Next school year her sister Miyah is starting kindergarten and the girls want nothing more than to be able to ride a bus together. Addie says she wants to ride a regular bus with her sister and not have to be strapped into her wheelchair on the bus. For this to happen we would need to leave her wheelchair at school or drop it off and pick it up every day which is impossible. We do not want to leave her chair at school because she does need it outside of school. So the only option we could come up with was to purchase a second, more basic wheelchair that was specifically for school use and could be left there all year.

we are a single income family of 6 soon to be 7 so it is far beyond our ability, to purchase another wheelchair and insurance said absolutely not. So we are trying to get the funds together to be able to buy her a school wheelchair before August so she can have some normalcy in her school experience and she and her sister can ride the bus together making them both more comfortable and happy on the way to and from school.

I am asking that if you can not donate please just share this page as much as you can so we can give Addie her wish before the next school year.