How old was your child when they were diagnosed with SIOD?
What were your thoughts when you FIRST learned that your child was diagnosed with SIOD?
With our journey it actually helped things make sense. It was overwhelming realizing the outcome and knowing rare diseases are not funded well for research and even makes medical care hard.
Tell us briefly about the medical complications that have occured because of SIOD:
FSGS and not being responsive to meds. Just battling the FSGS and how sick the meds were making her and getting her nephrologist to listen is a battle. We have been dealing with her complaining about her heart and headaches. Just getting help from doctors here has been difficult.
What has your childs treatment plan looked like?
We thought we were just battling FSGS so that has been the focus. Along the way we got to an endocrinologist to help with her thyroid and adrenal insufficiency. It has been slow, frustrating and alot of ground work getting doctors to help or listen.
What challenges does your family face because of SIOD?
We miss alot of family parties or just getting together in general because at any moment Madi just won't feel well. We battle being able to plan a big vacation because of fear of what if she ends up not doing well or get's sick, also medical expenses and having enough paid time from work are big factors.
Madi has always been our happy smiling, bright energy kid. Her favorite colors are pink or purple. She loves to be creative, like creating new doll outfits or making her own doll or barbie furniture. She has a natural talent for singing and can often be heard singing around the house. She is certain her and Taylor Swift will be Bffs and sing together.