How we’re honoring a gift from a Sanfilippo child and her family
The present that's helping our daughter see displays of Christmas lights again
For many people, the holiday season is a happy, joyous time of year. It’s typically busy, as most of us prepare for family and friends to gather and celebrate. For others, though, this period can be sad and difficult, as they’re reminded of loved ones who are no longer here — or simply loss in general.
I can relate to both sets of people.
My daughter Abby, 28, has Sanfilippo syndrome, a rare and terminal disease that’s slowly taking away all of her abilities. She used to speak in full sentences, move around easily, and perform simple tasks independently. Now, she has no functional language left, she’s unsteady on her feet and even falls sometimes, and she’s completely dependent on caregivers for everything.
Christmas memories with my daughter
Abby used to look forward to Christmas and everything associated with it. She helped decorate the tree, loved opening presents, and enjoyed looking at Christmas lights. During past holiday seasons, my husband and I would put our daughters in the car and drive around looking at these lights several times a week. We would blast Christmas music and sing along and have so much fun together. These drives were so simple, and now they’re memories I cherish.
Over the most recent Christmas seasons, we haven’t been able to get Abby into a vehicle to go see lights. Sanfilippo has caused such damage to her brain that her motor planning and related skills are severely impaired. She requires assistance when she walks to prevent her from falling, and her ability to maneuver her own body is almost nonexistent. It’s like she’s forgotten how to get into and out of a car sometimes, or even her bed.
A gift that changed so much
One silver lining of Abby’s Sanfilippo diagnosis is that we’ve been able to connect with numerous other families who have children with this disease. Knowing that these people have similar challenges eases our burden ever so slightly. There’s always comfort when you feel you’re not alone. And the other families we’ve met are so special.
Recently, a family posted in a Facebook group for parents of Sanfilippo children that they had a vehicle valet seat they no longer needed. Their precious daughter Aislinn (in a painting, left) had Sanfilippo syndrome and passed away, and they wanted another Sanfilippo family to benefit from the seat. They wanted to give it to a family with no payment required, other than shipping costs to get it to its new destination.
We reached out to this family immediately after seeing the post, and we now have the seat for Abby. It’s been life-changing for us. Truly life-changing: That’s not an exaggeration.
This seat is motorized and has a remote control. We can push a button to swivel the seat and lower it out of the vehicle, down to a position where Abby can sit in it. After she does, another button raises the seat and swivels it back into position.
Abby’s had more outings lately because of it, and yes, we’ve even taken her to see the Christmas lights!
Honoring Aislinn’s memory
How do you thank a family for a gift like that? The one thing I knew we had to do was honor Aislinn and assure her parents that she wouldn’t be forgotten.
Awhile back, I painted several portraits of Sanfilippo children who had passed away and mailed them to their families. I decided to do one of Aislinn. That’s my painting above; her family has it now.
Aislinn’s family created a nonprofit group, Aislinn’s Wish Foundation, to continue spreading awareness about Sanfilippo syndrome. One way the family does that is by selling wooden butterflies for people to paint and display. That inspired me to make a felt butterfly that looked like the wooden ones. I added Aislinn’s name to it and attached it to the car seat, where it’s a constant reminder of her.
We’re forever indebted to Aislinn and her family. I hope she’s watching over Abby every time she rides in the seat. In time, perhaps I’ll meet Aislinn’s family in person. I hope so.
When Abby’s time on Earth is done and she joins Aislinn in heaven, we plan to gift the seat to another family who needs it. It’s a present that should be shared. And maybe it’ll enable that next family to take their precious child to see Christmas lights.
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.