Sanfillippo Syndrome

This my daughter Maddie.

She has a terminal illness called Mucopolysaccharadosis Tyoe 3c, aka Sanfilippo Syndrome Type 3c.

Essentially, it’s Alzheimer’s/dementia for children.

There is no treatment.

There is no cure, except death.

Her disease is very rare as it affects 1 out of 1.5 million children.

Typical lifespan is about 13-25 years. Madison is currently 13, but doing well. Her cognitive functioning,movement, and emotional intelligence still continues to decline.

This is my sadness.

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I’m sorry for your sadness. I admire your strength and courage. We are here to listen and hold space for you. You are safe to express your thoughts and feelings here. What a blessing it is to live in recovery through life’s ups and downs. While far from easy, this is the easier and softer way. Wishing you peace, love, and understanding on your journey.

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