Feeling Isolated While Parenting a Sanfilippo Child

Raising a special-needs child can be isolating. You think no other child is like yours, and other parents won’t understand the daily challenges you face.

When I thought my daughter Abby had autism, I didn’t join a support group or seek out other moms of children with autism. I felt like Abby was unique, and that talking to other parents would frustrate me. I had great friends, and our family was incredibly helpful with caring for her.

Abby’s diagnosis of Sanfilippo syndrome at 22 brought a sense of relief. “I’m not crazy!”

Raising her as a toddler and adolescent was hard. Incredibly hard. Her speech was delayed, so she couldn’t communicate well. She was extremely hyper and very oppositional. I had to climb many jungle gyms at parks and fast-food restaurants because she wouldn’t come down when it was time to leave.

As a mother, I felt inadequate during those years. Other parents could get their special-needs children to comply. It just seemed easier for them.

Abby’s diagnosis meant that I wasn’t crazy because it gave her problems a name: Sanfilippo syndrome.

Children with this disease are all the things Abby was as a child. They can be difficult and try your patience. There is a reason God makes them so adorable! I am grateful that her true diagnosis was not revealed sooner. I cannot imagine knowing for all these years that she was going to die. Living on pins and needles, scrutinizing every little thing that happens. That is no way to live.

But now that I know her life will end early because of this disease, it again brings feelings of isolation. My husband, Jeff, and I have connected online with other families who have Sanfilippo children. We attended a conference and met some of these families. It helps to realize that others have similar challenges.

Our family is still different. Most Sanfilippo families have toddlers or adolescents. Their children are still in school. Abby is 24 and graduated from high school in 2016. Most days, she stays at home with a caregiver. Sanfilippo children typically do not live past their teenage years.

There are highs and lows. I struggle with feelings of isolation, but my marriage is stronger. Jeff and I also have a closer relationship with our daughter Emily. Our extended families are very supportive.

Tragic events have multiple effects on people’s lives. We are thankful for what we have gained, and we treasure the time we have left with Abby.

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Note: Sanfilippo News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.