Ellie fighting JDM

I'm sitting here in a hospital room while holding my 5 year old on my lap 4 hours and 200 miles from home while she's hooked to an IV machine infusing her blood with antibodies to hopefully make it stop attacking it's muscles. This is our monthly reality. Our weekly reality invoves lots of tears as we have to inject a chemotherapy drug into her leg once a week. And our daily struggle is taking steroids every single day.

Ellie was diagnosed with juvenile dermatomyositis around may of 2023. It's a very rare autoimmune disease that attacks your skin, muscles, and blood vessles. Only around 4,000 children in the United States suffer from JDM. It's unknown at this point if we will reach a point in her disease where it was be in remission or not. Some children can go into remission after IVIG and methotrexate and others who go into remission and then redevelop symptoms while some children never go into remission at all.

JDM affects every aspect of our every day lives between med times, staying out of the sun because that can cause a flare up, and every other illness she catches due her to weakened immune system.

Ellie has rare but very much real spells where she can't even use her legs to walk. Thankfully it's not as bad as it could be, but we never know what is to come.

We've applied for SSI for ellie, but haven't heard anything back, we use the Ronald Mcdonald house for lodging on our monthly trips, and we utilize modivcare for some of the gas mileage reimbursement, but we're still left with days of missed wages. The only way we've been able to remedy this thus far is to alternate which parent takes her to her infusion each month, but that leaves Ellie without the other parent while stuck in the hospital. As a mother it breaks my heart to know my little girl is states away in a hospital and I can't be there with her because of financial obligation and I know it bothers her father equally.

Any money that's raised will be put towards Ellie and her wellbeing.