What caregiving looks like for our adult child with Sanfilippo type A

Raising a disabled child is difficult. They require more help to be successful in the world. They may need something as simple as extra time to complete tasks or something much more involved, such as wheelchairs or other mobility equipment.

When disabled children reach adulthood, caring for them can become even more complicated for many reasons. My daughter Abby is 27 years old and has Sanfilippo syndrome. It’s slowly robbing her of all kinds of abilities, including speech, cognitive functioning, and motor skills.

How parenting a disabled adult is different

Firstly, if a child reaches the age of 18 and doesn’t have the cognitive ability to make decisions for themselves, the parent or caregiver should consider obtaining guardianship. This status allows the parent or caregiver to become the child’s legal guardian and make decisions on their behalf. It keeps the child safe and protected and shifts the burden of decision making about care from the child to the guardian. My husband and I obtained guardianship of Abby, so we’re solely responsible for her care.

Another aspect of parenting a disabled adult is their adult size! I can no longer pick up Abby and place her where she needs to be, even if it’s necessary. And her motor skills are weakening with age, which means she often needs help getting around. The trickiest part of this problem is that her motor planning has declined so much that she’s forgetting how to do physical tasks, including getting into bed or the car. Helping her with these acts while preventing us both from falling is becoming more difficult as time passes.

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Disabled adults do not always appear disabled

Abby has an attenuated form of Sanfilippo syndrome, which means it progresses more slowly. It also means the disease doesn’t present the same in her as it does in others. Abby’s appearance doesn’t automatically reveal that she has a disease or disability. This fact inherently creates expectations that Abby will exhibit “normal” adult behavior. Others might be surprised when we speak for her, as we must.

We share Abby’s story on Facebook, Instagram, and TikTok to help spread awareness of Sanfilippo syndrome. Several times we’ve received questions about whether Abby can consent to our sharing her information online. We occasionally get accused of exploiting her or infringing on her rights. I truly believe that if she were a young child or appeared disabled, we wouldn’t receive this criticism.

We’re lucky she’s reached adulthood

The average life expectancy for a child with Sanfilippo type A is 15 years old. Abby has well surpassed this age, and we’re so grateful. I always feel the need to state this feeling when I mention the hardships we face. So many families who have children with this disease cannot say that their child is still alive at 27. We’re very fortunate, and we realize that. Our goal is to make whatever life she has left comfortable and happy.

Note: Sanfilippo News is strictly a news and information website about the syndrome. 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, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.