Friends and Supporters,
This Wednesday, I’m going to bring you the story of Tess, a beautiful 14-year-old girl from Maine. I know Tess incredibly well. I know Tess is a great skier. I know that Tess doesn’t like long car rides. I know Tess has a great older brother. I know Tess likes listening to tunes, especially an indie rock band named Remember Sports. I know all these things, but I’ve never actually had the pleasure of meeting Tess in person. You see, I know these things from my favorite weekly podcast, Stronger Every Day (https://www.portlandrootsmedia.com/strongerpodcast).
It just so happens that Tess’s dad, Bo, does a weekly podcast about Tess and the daily happenings of their family life raising a child with a rare disease. It’s no coincidence that I’m highlighting Tess on a Wednesday – that is the day of the week the podcast is released.
Tess was born with a rare genetic condition known as Hao-Fountain Syndrome (“HFS”), or USP7. It just so happens that HFS was discovered by the same researcher that discovered Schaaf-Yang Syndrome (“SYS”), Christian Schaaf. Tess was one of the first patients identified with HFS, which shares characteristics with many other neurodevelopmental disorders, just like SYS. One of Tess’s biggest challenges that come with HFS is that she has autism and faces many communication challenges. She also has intellectual disability, but she is smart. She can figure things out, but sometimes gets frustrated about not being able to do things. However, Tess is very active and has recently started playing basketball!
Like many families with children with special needs, the toll on the family is big. Bo had to quit his job as a full-time attorney to stay home and become her primary caregiver. I know from listening weekly to Bo that Tess has a lot of energy, which requires her to have one-on-one supervision 24 hours a day, 7 days a week. This is a tough decision for families, but the complex nature of caring for these kids requires many hours of therapy and multiple doctors’ appointments. Also, even some of the simplest tasks can take a long time or be overwhelming.
Despite the toll Tess’s diagnosis took on her family, that didn’t slow Bo and his wife, Kate, down. They started a non-profit together, Foundation for USP7 Related Diseases, whose mission is to cure HFS by funding research and finding more patients. Raising a child with a rare disease, weekly podcast, running a non-profit – bravo!
I learned of Bo’s podcast through another rare disease family. Listening to it weekly is like therapy for me. Hearing struggles that are similar to what we are going through and hearing accomplishments and happiness that Tess experiences are both helpful as I process the emotions of raising a daughter with a similar rare disease. Sometimes I laugh, sometimes I cry, but every time I feel more equipped to face the day knowing that someone else in a similar situation is doing the same thing as me, and they are thriving.
Like I said earlier, I know Tess. She is a very happy person. She’s very social; she loves people! Bo and Kate hope Tess can be surrounded by friends in her life. They also think someday she would like to have a job – she’s a hard worker and is capable of hyperfocus. With the determination I know Tess has, and the love and support of her family, she will accomplish great things.
Please consider making a donation to the non-profit organization Bo and Kate started. You can donate at www.usp7.org/donate.
Now last question before you go. How many of you Googled “Remember Sports”? If you did, Tess recommends the track “Otherwise”.
With love,
Matt (and Courtney)
Hayden and Bo in October
