My Advice to Other Sanfilippo Siblings

I recently read a column about a teen whose brother has special needs. A lot of what the author said was spot on. She described what I experienced with my sister, Abby, when I was younger. As I read it, I thought about the small, often overlooked population of Sanfilippo siblings.

I am in a unique position. Many of the Sanfilippo siblings I have met are much younger than I am. By the time they are my age, their siblings probably will have passed away. These kids and young adults need reassurance that they are not alone, that they will get through each day, and that they do have available resources.

After Abby was diagnosed with Sanfilippo syndrome, it didn’t take me long to notice the lack of resources for siblings. A rare find was The B.L.A.I.R. Connection, run by Grey Chapin. Grey is the younger sibling of Blair, who passed away from Sanfilippo syndrome in 2017. I love the quote that Grey uses on her website: “Because though every child with a terminal illness is Brave​, Loving​, Amazing​, Inspiring​, and Relentless​ (B.L.A.I.R.​), so are their siblings.”

It’s true! I admire what Grey has done for this community of siblings of terminally ill children, and I hope to continue spreading awareness and offering support.

To be a resource, I have to share what I wish I’d been told when Abby was diagnosed two years ago.

I wish someone had told me that Abby’s diagnosis did not mean I had to compensate in any way. My parents are extremely supportive. They only ask that I do my best, and they never set expectations that are out of my reach. But having a sister who is mentally ill — especially one who has been stripped of skills she once had — creates pressure to compensate for what she no longer can do.

This brings me to my most important point: You are important. Although your sibling may become the predominate focus of your family, you are irreplaceable. There are times that every sibling of a special-needs child feels unimportant. When I become frustrated with my sister, I feel more like a burden than an irreplaceable member of my family.

It is so important to remember that it’s OK to be frustrated with your sibling. It’s also OK to be frustrated with your life. Siblings of terminally ill children are special people, but they’re also human. They have unmatched kindness, patience, and acceptance. They’re also typical siblings. It’s OK to be angry or sad. It only becomes not OK when you’re living your life that way.

Live a positive life with occasional down days, not the other way around.

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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.