Story about Sanfilippo Syndrome .

Heather Ashley

Nov 3, 2019

By: Melissa

Year Condition Began: 1991


My daughter was diagnosed with Sanfillippo Syndrome 3 a month after my son passed away at the the age of 26 days old. He was on life support and we has to disconnect life support due to him needing a heart and lung transplant and his organs were failing. The next month we were told Heather was terminally ill. She was 2 years old and there was no cure. She passed away exactly 1 year after her brother. It was the worst day of my life. 27 years later I still haven’t been able to get over it. I wasn’t able to have anymore children. Even though my husband and I are still together I don’t really think in his heart
Story about Sanfilippo Syndrome

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Is Sanfilippo Syndrome contagious?

Is Sanfilippo Syndrome contagious?

Living with Sanfilippo Syndrome

Living with Sanfilippo Syndrome. How to live with Sanfilippo Syndrome?

Sanfilippo Syndrome cure

Does Sanfilippo Syndrome have a cure?

History of Sanfilippo Syndrome

What is the history of Sanfilippo Syndrome?

Sanfilippo Syndrome life expectancy

What is the life expectancy of someone with Sanfilippo Syndrome?

Sanfilippo Syndrome diagnosis

How is Sanfilippo Syndrome diagnosed?

Couple and Sanfilippo Syndrome

Is it easy to find a partner and/or maintain relationship when you hav...

Sanfilippo Syndrome diet

Sanfilippo Syndrome diet. Is there a diet which improves the quality o...