Cover medical expenses and equipment

Hello World,

My legal name is Elizabeth, but I go by Vixyn. I am raising money to try to get my child a custom wheelchair, some home medical equipment, botox injections (insurance is not wanting to cover), possibly a cheap vehicle to accommodate her safely as she can't safely travel in what I currently own as she cant sit up, take her to specialists who can actually see her out of state, and to hopefully pay for some of the nearly 60k in medical debt (so far) from insurance denying claims.

Jessie is 12 and when she was 10 her left foot started turning in almost like a club foot. At the time Jessie was in Italy with her dad and the military doctors there dismissed the problem as all in her head. As soon as she got home, I started the process of trying to find out why as it had gotten to the point she was walking on her ankle, not her foot. Shoes were no longer an option and within a month I purchased a knee rover to help her get around.

We went to Children's Primary who decided to try Chiari decompression surgery to see if it would help despite them being pretty sure the malformation wasn't causing the issue. But at that point nothing else they looked at could be it so we went for it being as it was going to need done anyway and hoped for the best. During the work up they noticed that Jessie is extremely hypermobile and noted it may complicate things and thay we needed to have it examined later. When it the surgery had no positive results, they started looking at genetics.

They found out Jessie has Tor1A gene mutation and determined that Jessie has Tor1A dystonia and began giving options. Unfortunately in the system moves ridiculously slow and in the 2 years since that first surgery Jessie has deteriorated to the point that she is requires a custom wheelchair I cant get or afford as the one I bought just hurts because her scoliosis no longer allows her to be upright for long without extreme pain. She no longer goes to school or leaves the house except for Dr appointments due to this.

In August of 2023 they did another surgery on her hip as it was dislocating which only made everything a 100 times worse. She is in constant pain and waiting for insurance to deny us just prolongs her pain. Her dad has Tricare as he retired from the Marines, but they are horrible to deal with and don't even want to cover her meds because they don't think she should be on them.

The doctors also won't do certain tests. I had to go outside and pay for most testing out of pocket to try to get Jessie's hypermobility diagnosed (which it still isn't). But in the process I found out Jessie also had another extremely rare genetic condition called COL4A1 which she got from me. The dystonia is moving up her body at a much more rapid rare than anticipated, and at this rate she will not be able to use her arms soon either. Her rib has already deformed from the way her body moves and no one seems to want to help. It's all wait for insurance and in the meantime I feel like I am watching her slowly die.

If I can just raise the money to get her the stuff she needs, and take her to doctors who don't have 1 year wait times like Utah does I think she might have a chance. But right now I'm just now seeing it and I'm not sure whay else to do, so here I am. Doing the last thing I wanted to which is to beg for help from strangers. I am attaching some photos and will upload videos to YouTube then link so you can get a glimpse of what my child deals with every single day. These are mild when it gets bad she is screaming and crying in agony. There is a picture of her rib, another of her showing her contorting, and some videos of when the legs go crazy. She consistently knees herself in the face and hurts me while I try to protect her from her own body. Which is quite literally trying to break apart.