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Muyang Yang

China

My Story

Muyang was 4 years old when she was diagnosed with SIOD. Her hobbies include painting, playing ping bang, and singing. Her favorite color is pink. She is outgoing, but cranky.

What were your thoughts when you FIRST learned that your child was diagnosed with SIOD?

Feeling sad and hopeless, but not willing to give up, and trying every means to find a cure.

Tell us briefly about the medical complications that have occurred because of SIOD

Stage 5 renal failure, short stature, t cell deficiency, hyperlipemia, hypertension

What has your child's treatment plan looked like?

First do abdominal dialysis, then do stem cell transplantation, then do kidney transplantation, and finally hope to solve the long-term mutation problem of smarcal1 with gene editing.

What challenges does your family face because of SIOD?

Lack of time and energy to take care of children, lack of funds and methods to carry out treatment, and lack of correct understanding of SIOD.

What would a cure mean to you and your child?

It means survival and hope.

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