Friends and Supporters,
We get the pleasure of bringing you a little boy from Georgia name Rhodes. Rhodes is 6 years old and has been diagnosed with Schaaf-Yang Syndrome (“SYS”). We got to meet Rhodes at the first conference we went to in Chicago. Rhodes was joined by his mom (Laura), his grandmother (Pat), and his teenage brother (Collier).
This was the first time I got to see a sibling of a child with special needs and how it impacted their life. When I spoke with Collier, I asked him why he came to the conference. I was expecting a typical teenage answer of “my mom told me I had to come” or “because I could miss school to come”. What I got from him was the complete opposite. He said he wanted to be there to support his brother and learn of ways that he could help his brother. There aren’t many words to describe how heartwarming that was. These kids with special needs are changing the lives of everyone around them.
Rhodes’ diagnosis impacts him significantly. Rhodes has severe developmental disability, cortical visual impairment, contractures of his hands and feet (which creates mobility challenges), scoliosis, inability to regulate body temperature, and if exclusively fed through feeding tube. He also has difficulty in communicating because he is nonverbal. Because he has contractures in his hands, he will not pick up or hold things. This means he won’t point or indicate preferences.
His parents have tried multiple devices to try to help Rhodes communicate, like eye gaze communication devices. However, they have been ruled out because he has one eye that doesn’t track exactly with the other. Recently, they found a new device that looks like it will work with just one eye so they are hopeful that they can get a device to trial more than a day or so before the investment to see if it really works. His inability to communicate also makes it difficult when he is sick because he is 100% tube fed. It is difficult to know what amount to put in his tube without knowing how much his stomach can handle.
Rhodes challenges have made life for the family of six more challenging. They must divide and conquer the other kids’ activities. Often, someone is staying home with Rhodes because he can’t handle the Georgia heat for all day sports tournaments that the other three kids have. This means mom and dad are driving all over trying to get kids to different activities and relying on friends and teammates to help where it’s not physically possible to do. Given Rhodes’ challenges, the family doesn’t travel like they used to and go on the excursions like they did before he was born.
Despite all of Rhodes’ challenges, Rhodes is the most enthusiastic and happy child in the world. He continually puts things in perspective for everyone in the family and always smiles. Rhodes recently started at a special needs school where all the children have disabilities. This has been a complete God send for Rhodes! The ratio of teachers to students is 2:1 or 3:1 and they have extra devices and multiple speech and physical therapists on staff. His growth and advancement have been exponential! He is now walking in a gait trainer and motivated to be with his classmates.
Rhodes’ favorite thing to do is mess with his dad while mom holds him. He loves snuggles and being with his family, especially his brothers and sister and attending all their sporting events. Rhodes loves chaos – the louder the better! In fact, one of his favorite songs is ACDC’s “Thunderstruck”. He also love to hear “Happy Birthday” (especially when people add his name to whoever’s birthday it actually is).
I asked Laura what their dreams for Rhodes were and she said she hopes he can progress to the point of living independently if he should choose to. She continued to say that more basic than that is that he can eat orally, walk and talk. She finished with saying, “While he makes life challenging, he is truly a blessing, and we are so thankful that we get to call him ours.”
All of these kids are blessings. They have blessed their families and changed the hearts of so many. We are glad to be part of the SYS community with Rhodes and his family.
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
