“What a difference a year makes.” Melissa Fitch is talking about the journey that took her son, Ryan, from emergency brain surgery to admission to the first 4-year inclusive college program in the state of California.
In May 2020, Ryan’s speech suddenly became slurred. A few days later, when Ryan noted that “my hands feel funny” and his family saw that his face was drooping, they called a neurologist.
A quick MRI at Cottage Hospital — during the height of the first wave of the pandemic, “the worst possible moment to go into any hospital” — led to the diagnosis of a rare arterial brain disease called moyamoya.
This is a one-in-a-million condition, but is more common amongst people with Down syndrome, like Ryan.
They checked Ryan out of Cottage Hospital on June 3, and a few days later went to Stanford Hospital for specialized treatment, where they learned Ryan was only getting 60% of the normal blood flow to his brain. At Stanford, Dr. Gary Steinberg restored the blood flow with two-part arterial bypass surgery on June 23 and June 30.
Ryan was lucky; he had only experienced a small stroke, with no lasting effects. Typically, moyamoya isn’t diagnosed until a massive stroke occurs.
Ryan “never complained about anything” during this ordeal, Melissa said.
“He was amazing. [But] the recovery was the scariest thing ever to go through, let alone to go through it during COVID,” she said.
Fortunately, Ryan’s quick recovery allowed him to start his senior year at Dos Pueblos High School on schedule. He worked hard while continuing activities he enjoyed such as taking photos at the football games and practicing with the swim team. He received his high school diploma — a rarity for kids with Down syndrome — in June 2021.
In mid-May this year, applications opened for the Redwood SEED Scholars Program at UC Davis, a new program designed for students with intellectual disabilities.
Exactly a year after his second brain surgery, Ryan learned he was one of 12 students admitted into the program’s inaugural class. Ryan and the other students will live in the dorms and follow a specialized curriculum geared toward allowing them to work and be self-sufficient, and will include paid internship opportunities and chances to self-advocate for inclusion.
The students will also have the opportunity to take whatever classes they want on campus.
“This is what you always dream of, that your child is able to go on and participate in a successful life, to be independent, to get an education,” Melissa said.
She is very proud and excited for Ryan, but a little nervous, as is a familiar feeling for parents sending their kids off to college.
On the financial side, she noted, “When you have a child with Down Syndrome, do you have a college fund for them? No, not usually.”
She is grateful Ryan received a $2,500 Art Scholarship for his photography from the Scholarship Foundation of Santa Barbara. But given the fact that this year is the first year of the Redwood SEED Scholars Program, traditional FAFSA/Pell Grant funding is not available, and most scholarship deadlines have long passed.
Melissa is spearheading an effort to set up a scholarship fund for this program, while, in parallel, UC Davis is working to secure ongoing state funding. They hope this program will serve as a model for similar programs at other California universities.
Ryan himself is “super excited” to be going to UC Davis. And, as he has done his whole life, he’ll seize the opportunities that present themselves. He is already looking forward to taking up bowling at the university’s underground bowling alley, and pursuing his photography and songwriting.
And he is ready to do what it takes to be successful in the program. Melissa describes him as “the epitome of perseverance. He never gives up.”
As his journey this past year has shown, that’s not an exaggeration.
More information on the Redwood SEED Scholars Program is available here.
A useful resource for exploring inclusive higher education options for people with intellectual disabilities can be found here.
If you’d like to learn more about ways to help Ryan and other students attend the Redwood SEED Scholars Program, contact Melissa Fitch at melissa@fitchcoinc.com .
— Jeff Moehlis is a Noozhawk contributing writer and a professor of mechanical engineering at UC Santa Barbara. Upcoming show recommendations, advice from musicians, interviews and more are available on his website, music-illuminati.com. The opinions expressed are his own.