Friends and Supporters,
Today, we get to bring you the story of one of the newest members of the Schaaf-Yang Syndrome (“SYS”) community. Today, we bring you 8-month-old Landon from Michigan. We got to meet Landon and his parents, Micaela and Jeff last October in Denver at last year’s SYS conference. This is the first time Courtney and I felt like we were mentors, and not just the mentees.
Landon is an adorable little guy who I think was happy and smiling the whole time I saw him. Like other kids with SYS, Landon struggles to accomplish most tasks that are effortless for other children. His growth is delayed, along with his cognitive abilities. Micaela and Jeff are thankful for the generations of rare disease parents and researchers that have come before us as we now live in a day of age where there are many therapies available to help improve these skills and behaviors. It’s comments like this that highlight the need for additional research for our kids. We have come a long way to be able to give our kids the therapies and opportunities to reach their potential, but this can be accelerated with more knowledge of these diseases and more advancements in research.
Landon suffers from severe central and obstructive sleep apnea. He struggles to breathe consistently while sleeping due to his apnea issues. His parents are pursuing oxygen treatments and some surgical options. Landon, like most SYS kids, has issues with growth that require growth hormone therapy. However, given Landon’s sleep apnea struggles, growth hormone therapy is not an option for him now as the growth hormone could make the apnea worse. Landon is also tube fed. He can take minimal liquids by mouth but is silently aspirating while doing so. Landon is also developmentally delayed, so is in physical therapy to work on basic muscle movement and learning skills like rolling, sitting up, tummy time and reaching for items.
The impact of having a child with special needs has a significant toll on a family. Micaela has had to step back from work and lose her income to care for Landon. Following up with doctors and insurance and getting him to all of his appointments is a full-time job in itself. In addition, consistent sleep is a struggle for not only Landon, but for Jeff and Micaela as well. Landon wears a sleep monitor while he sleeps and will alarm multiple times per night to alert when he is having apnea events. We went through this with Hayden, and it is terrifying and exhausting at the same time.
Landon is working hard every day in learning skills like swallowing, tummy time and other things that come naturally to other kids. This constant work is tiring for not only Landon, but also for Jeff and Micaela as it requires constant attention and working on those skills. All this work is paying off! Recently, Landon has been able to prop up on his elbows for short periods of time!
I asked Jeff and Micaela what their hopes and dreams were for Landon. They said they would love for him to have some sense of independence where he can feel proud of his accomplishments and to experience continued joy in his day-to-day life. The more immediate hopes are for him to walk, talk, and eat by mouth – all of which I know will come with his hard work in therapy.
I asked Micaela and Jeff if there was anything else they wanted to share about Landon, and this is what they said. “Though Landon has a unique journey to accomplish what seems to come so naturally to others, he is a bright light always willing to lend a smile or a snuggle. A constant reminder of how precious our lives are and how precious a human life is. It’s made us view life and value the life of a human so much more. It’s a treasure and a privilege even in the midst of a new hardship to take care of someone so precious and joyful.” I couldn’t have said it better. Landon is lucky to have you guys.
To donate to help to continue to fund research to help find therapeutic treatments or a cure for SYS, please donate at www.faithforhayden.org/donate.
With love,
Matt and Courtney
