December 2022 Special Needs Living Akron/Canton

Meet the incredible Ryan Houck and family! A story of how support can go a long way!

WRITTEN BY ANDREA HURR PHOTOS BY JULIAN CURET

Ryan has MDS, Miller Dieker Syndrome, which is a rare genetic condition that has no cure and a very short life expectancy (which Ryan has surpassed!). Most children pass away by age 2, however, Ryan is 8 and a half, and the Houcks credit a lot of that to his Palliative Care Team, his grandparents, their city, which has earned the title Nicest Place in America by Reader’s Digest, and other MDS families. Meghan’s biggest piece of advice is to find a great support system and ways to bring your family together.

MDS is a life-limiting, rare chromosomal disorder in which the person is missing part of chromosome 17. It is caused by random chromosomal change, and the main component to it is Lissencephaly, meaning smooth brain. Ryan suffers from global developmental delays, seizure disorders and respiratory issues. He has had 13 surgeries and often staying in the PICU was the norm for them. Eighteen months through 4 years old saw Ryan in the PICU once a month for a week or so during every cold and flu season.

They found some relief in 2018 with IVIG infusions (Intravenous Immunoglobin-a substance made from antibodies that have been taken from the blood of many healthy donors), which have helped his seizures and respiratory illnesses and a BiPap machine at night during sleeping which has kept them out of the PICU for respiratory issues and allowed them more time together.

The “Nicest Place in America” has a renovated theater in the center of town, and they offer special needs productions for individuals with various special needs to shine on stage. Ryan starred as King Triton in the Little Mermaid, an Oompa Loompa and television reporter in Willy Wonka and the Chocolate Factory and young Shrek in the Shrek the Musical. Meghan says they have met so many incredible people and their family members through this opportunity. “We will cherish and treasure these memories forever.” For his part in The Little Mermaid, Meghan wore Ryan in a baby carrier and helped him act on stage while his dad was off stage reading the lines. It brought them together as a family and was a truly transformative time for them. Before joining the theater, they kept to themselves about Ryan and his diagnosis. “The support, love and lessons learned from all the participants and their families was incredible.” She goes on to say,

“At that point in Ryan’s diagnosis, we were feeling very down, because at 18 months old, we were moving out of the infant stage, and it was becoming very clear that Ryan was not progressing developmentally. This production gave us something to do with Ryan, which made us feel normal.” Memories for a lifetime. As with most special needs parents, finding a support system is instrumental in getting through the days. Palliative Care has been a critical asset to the Houcks. The team has jumped through hoops for them so they can spend more time with their family and not on the phone. Meghan considers the team family and says that they are unsung heroes, “They have the kindest hearts and are so extremely knowledgeable.” There are too many people to list here, but she goes on to thank the team and credit them to getting them through this journey. She also says that there is a stigma around Palliative Care as “endof-life care” only, but Ryan is proof that it is so much more than that. He has already outlived his prognosis four times over and a big reason why is Palliative Care!

Another piece to their support system has been Jack and his mom, Cassie. Jack was another child with MDS, and when you have such a rare condition, it is invaluable to have someone in the same boat. “I always appreciated having someone to ask questions to because many times, as a special needs parent, you feel as though you are traveling this journey alone, but when you are able to talk to another family that has walked a similar path, it gives you support and reassurance.”

Lastly, family has given them so much. Ryan has two brothers, ages 5 and 2, and the Houcks are so happy that he has siblings. Both boys are extremely loving and gentle with Ryan since day one, and as they get older, they like to do more and more to help him. Ryan, in turn, has taught them empathy and compassion for others — more than they could have learned anywhere else. He has an amazing bond with his grandparents, especially grandmother Nene. She watches Ryan during the day so the Houcks can work their full-time jobs, and Meghan is “forever grateful for Nene’s love and selflessness. We could have never done this without her.”

Ryan has surpassed so many obstacles, and clearly, it is because he is meant to be here and because of the love of so many people. Instead of wallowing in his diagnosis, the Houcks have embraced it and decided to enjoy the time Ryan has here with them. They found the support they needed in Palliative Care and didn’t let the meaning “end-of-life care” scare them. They’ve gained so many more years with Ryan because of wonderful people and modern medicine. I have a feeling that Ryan has taught them more than they ever imagined in return.