Help Support Abby and Carters Fight Against SIOD

Abigail has been diagnosed with Schimke immuno-osseous dysplasia ( SIOD ). SIOD is caused by a mutation in the SMARCAL1 gene A rare, inherited disease that affects the kidneys, bones, heart, lungs, and immune system. Abby has been fighting this disease a lot longer than we knew before she was diagnosed it all started almost a year and a half ago. We noticed the swelling in her eyes and face wasn’t normal we took her to her regular pediatrician but they thought nothing of it but it kept getting worse every morning and would go away throughout the day, so we believe the doctors Until she started school back in September 2024 she started to get worse. She was coming home sick frequently she started putting on weight which we didn’t know it was fluid buildup. Until one morning we rushed her to the ER after finding her curled up and fetal position crying in pain. Luckily the ER doctor was familiar with this disease and took all the right steps to determine that it was nephrotic syndrome from then she was transferred to Duke university Hospital, where the official diagnosis was made after a day and a half of being there we got sent home on steroids and a few other medication’s hoping that it would work but a few days went by and we noticed she was getting worse, not better. She was still in a lot of pain and fluid started building up in new spots like on her spine. We brought her back in for the 2nd time she stayed for a few days to get the fluid off got sent home on a higher dose of steroids after three days she was getting worse in pain again we brought her back for the 3rd time that’s when she stayed for a whole month this is where things took a turn for the worse. They gave her too high of a dosage of steroids which caused her to constantly have high blood pressure and sent her into a state where she had stroke like symptom’s she was in the ICU for 4 days numerous doctors did number of test and scans to figure out what happened but they gave us no answer. After that, we were here for another 3 weeks. Where she had to have a biopsy done and from there she was diagnosed with FSGS and we were told she was steroid resistance because of this. We had to spend her 6th birthday here sadly. We got to go home for the weekend before Christmas but she was remitted for the 4th time Monday before Christmas because her lab work showed she had a cute kidney damage. She was no longer able to pee on her own and she was just holding onto all the fluid which caused her a lot of pain they discharged us on Christmas eve we got to go home for Christmas. Now we have been remitted today which is the day after Christmas for the 5th time. Doctors just told that she has to stay for a few months and once her genetic testing comes back whether it is genetic or non-genetic we are starting the next steps which is dialysis and a kidney transplant. This process is going to take a year maybe longer it just depends on her body and all the steps and how long it takes to get everything done and whenever she is able to get a kidney. In the short time that she has been diagnosed with this I’ve seen my daughter change, not just physically, but mentally I’ve seen her get depressed she wouldn’t eat. She wouldn’t talk to me. She wouldn’t even get out of bed. I’m I’ve seen her have panic attacks and such

L bad anxiety. We have a long road ahead of us and it just breaks my heart seeing my little girl like this. No six-year-old should be feeling the way she does.

We’re not asking for the world; we’re just asking for a little help to ease the financial burden with everything that is going on, and any little bit will help.