Family Friday 2023: The Wallis Family

July 25, 2023
Solomon Pearson and his family, living with Sanfilippo Syndrome

Hear directly from the Wallis family – Parents Jeff and Kelly, Abby (age 27, Type A), and sister Emily!

Awareness is a huge part of fighting Sanfilippo Syndrome. With awareness comes caring and understanding, which can lead to support and donations for research that can give children with Sanfilippo more good days.

“Family Friday” are a way families and the Foundation help spread awareness, by sharing a window into their family’s life. A window that builds understanding and visibility of life with Sanfilippo, the difficult and the uplifting, and everything in between.

This week, we are honored to share the insights and personal perspective of Abby’s family. Abby is 27 and was diagnosed in 2017.

Solomon Pearson, living with Sanfilippo Syndrome
Solomon Pearson and his family, living with Sanfilippo Syndrome
Solomon Pearson and his family, living with Sanfilippo Syndrome

What is a “life with Sanfilippo” hack that you use all the time?

Using music and/or videos (mostly from Abby’s past that she remembers) for multiple purposes. For example, if she’s a little cranky, we’ll blast a YouTube playlist of some of her favorite songs, either from favorite artists or from soundtracks of favorite movies. That distracts her and gets her to laugh and/or try to sing. Another way these playlists are utilized is to help Abby when she is having any difficulty with urinary retention. Many of these clips make her laugh, hard. That gets the job done 98% of the time. We also use it when riding in the car or waiting for something (doctor visit, etc.) to keep her occupied.

What is your day-to-day life like and how does it differ from a family that doesn’t have a child with Sanfilippo? How is it also the same?

Because she’s 27, Abby’s life and ours differ greatly from someone who doesn’t have Sanfilippo Syndrome. She should, at this point in her life, be on her own, maybe married, maybe even with kids of her own.

In terms of how it differs from someone with a child in their home, however, the first noticeable difference is that we wake up to look at the iPads on both walls of our bedrooms streaming video from Abby’s bedroom. Once she startles, one of us immediately takes her to the bathroom. She gets back in bed and watches SpongeBob SquarePants for a little bit (one of the shows from her youth that she remembers and loves).

Once breakfast is prepared for her, someone gets her up and feeds her. Several days a week, her ABA therapist comes around breakfast time to spend an hour with her. After that, she will typically watch some favorite movies from her childhood. Other days she might join her caregiver for a trip to get out of the house for a little bit, or for a dip in the pool using her new hydraulic lift to get her in and out.

Lunch and dinner are also prepared and fed to her. Every other day she is showered in her walk-in shower with a shower chair. Her bedtime routine involves getting in bed at 8:00 p.m. with another one of her favorite movies playing. At 9:00, she gets melatonin to (hopefully) help her sleep. About 9:30 when that movie is over, we switch it to one of her two “kryptonite” movies, Bambi or Lady and the Tramp, and turn off her lamp.

We discovered a few years ago that those two movies seem to put her to sleep most of the time. I guess we could consider that another “hack” from the other question!

Once it is time for us to go to bed, we turn on the previously-mentioned iPads. Some nights are uneventful, others might see her awake more than asleep and needing to be taken to the bathroom a few times. Throughout all of this, her lack of motor skills and motor planning, along with the fact that she is a full-grown adult, cause her to need 100% assistance at all times and makes normally simple tasks, like getting into bed, challenging.

Solomon Pearson, living with Sanfilippo Syndrome
Solomon Pearson, living with Sanfilippo Syndrome
Solomon Pearson, living with Sanfilippo Syndrome

What drove you to get your child/children diagnosed? And what was the diagnosis journey like?

Abby was diagnosed at 4 or 5 years old with Autism. Although we always, in the back of our minds, never felt that “fit” her.

For the next 15 years, she slowly regressed. We always wondered whether she was regressing or if the gap between where she was and where a “typical” child should be was just widening. But in hindsight, she was regressing.

In 2016, at about age 21, that regression became significantly more severe. Abby began losing her language, began having accidents at school, and was not able to do things the way she used to. At that point, we became determined to find an answer.

We created a Facebook page called “Abby Updates” at the time (our logic was “you never know who knows who.”) We also determined we needed to consult a neurologist.

The first neurologist we visited did a CT Scan and an MRI. Both showed significant atrophy in the brain, but he wasn’t able to determine much beyond that. By the time we visited our 3rd neurologist, he determined that, whatever it was, it was likely genetic and ordered a battery of genetic tests.

While we were waiting for those tests to be scheduled, Abby’s mom, Kelly, was working at a music therapy camp as part of her job as a licensed Music Therapist. At that camp was a young boy named Will Byers (who has Sanfilippo Syndrome), accompanied by his mom Valerie.

Valerie overheard Kelly talking to another mom about Abby and they visited. Valerie shared her contact information and promised to stay in touch. Later that fall, we shared a video of Abby singing on the Abby Updates page. Valerie asked if she could share it at the Sanfilippo conference she was attending. Each expert she shared the video with suggested that Abby get tested for Sanfilippo. We immediately asked our pediatrician who ordered the MPS urine screen despite never hearing of Sanfilippo.

On August 25, 2017, we got the news that the screen came back positive, which led her to send us to a Geneticist at Texas Children’s. That geneticist ordered bloodwork (sent to South Carolina) and urine (sent to Stanford) to test specifically for Sanfilippo Syndrome. We went back to see him on October 25, 2017, to get the news that she was officially diagnosed with Attenuated Sanfilippo Type A.

Once we left the Geneticist’s office, the Abby Updates Facebook page transformed into “Abby’s Alliance – Battling Sanfilippo Syndrome,” and the focus turned from searching for answers to raising awareness and joining the fight for a treatment and cure.

Learn more about Abby and her family:

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