Le Touquet, France
Brunette loves rabbits more than anything! She loves to dance, and enjoys every moment with the family. She loves the color pink and glitter.
How old was your child when they were diagnosed with SIOD? 2 years old.
What were your thoughts when you FIRST learned that your child was diagnosed with SIOD?:
We have been annihilated for a few days and the urge to beat has taken the lead against this terrible diagnosis we are back in the fight as the schimke.
Tell us briefly about the medical complications that have occured because of SIOD:
Brune has very few immune defenses. She has severe growth retardation, and has a proteinuria leak in the urine leading to end-stage renal failure.
What has your child's treatment plan looked like?:
Brunette has Renitec treatment for tension. Kardegic to thin the blood for neurological causes, and bactrim to mimic any infections.
What challenges does your family face because of SIOD?: The schimke never changes our life. Our family's fight today is to make the schimke a serious and not a deadly disease!