ROCKY RIVER, Ohio — An Oscar-nominated actor recently spoke exclusively to PEOPLE about his adult son with a rare syndrome. It was the first time Colin Farrell had spoken publicly about his son.
It inspired a Rocky River family to share their story, as well, in hopes of continuing to build on the awareness and support they say is important to creating a more accessible and inclusive world for children like their daughter and many more.
“I do feel like she’s like an angel on earth,” said Beth Synk. “She’s so happy and everywhere she goes I feel like she brings so much joy.”
When you become a parent, you want the world for your child. You become a mover of mountains.
“You can’t meet Immy and not fall in love with her,” Beth said.
Then, one day, you realize your child will move mountains.
“Of course, this diagnosis has been devastating, but you can’t be sad when you’re around Immy,” she said while Immy grinned, giggled, and cuddled in her lap. “If I’m in a different room being sad about something, as soon as I see her, I can’t be upset anymore! I’m so glad she’s in our lives. I feel like she has really broken our world open in very difficult ways but also the most amazing ways, and I’m certain she’s going to leave the world a better place than she found it.”
Beth and Mike Synk’s youngest daughter, Imogen, 3, has Angelman Syndrome; a rare, neurogenetic disorder that affects about one in 15,000 people and causes developmental delays.
“Almost every day she has a therapy,” said Beth. “So, speech therapy, occupational, and physical.”
Immy is unstoppable.
She uses a little purple walker that’s as bright as her smile, which lights up with every step.
“You can tell she loves the independence,” said Beth.
Immy is working so hard, gaining strength and confidence with every step, and leaving limitations behind. Her parents say she’s so close to walking independently.
“She is capable of more than any of us can know, and we just have to keep supporting her in that journey.”
Supporting families around the world and here in Northeast Ohio, like the Snyks, is the nonprofit patient advocacy program called FAST.
“We have a goal to cure Angelman Syndrome,” said Laura Foglyano with the Foundation for Angelman Syndrome Therapeutics. “Very simple.”
Foglyano says FAST has raised more than $50 million for research since its formation in 2008. She says right now, a cure looks different for every family; be it gaining communication skills, eliminating seizures, or independent living.
“I think it’s really exciting that for a rare disease there is a lot of hope,” said Foglyana. “We have 20 therapeutics in the drug development pipeline. Two of those have finished with their phase one and two trials, and hopefully headed to phase three soon, and we can’t wait for the day when there’s an FDA-approved treatment for all of our families.”
She says individuals living with Angelman Syndrome have a normal life expectancy, but they need life-long care.
Foglyano says the drugs that are in development for Angelman are showing encouraging results in clinical trials.
She says the fundraising, like for so many rare diseases, is critical because she says even just to get to a clinical trial, each program costs about $15-$25 million, and they raise most of their money through community fundraising and philanthropy.
Actor Colin Farrell recently made headlines when he spoke of his son James, who has Angelman Syndrome and of the foundation he started to support families with adult children with intellectual disabilities.
That kind of support, exposure, and awareness is critical, says Laura and Beth.
“I want for Imogen all the same things that any mom would want for their child,” said Beth. “I want her to be happy, I want her to have friends. The things that I’m not sure that she will have and that I very much hope are just choice, right.”
It is why organizations like FAST and families like the Synks will keep fighting —because Immy isn’t giving up.
She just started preschool in Rocky River, where she uses a special iPad to talk.
“Yesterday, they asked her what she was thankful for and she hit family, family, eat,” smiled Beth. “So, we’ll take it!”
So many thoughts. So many dreams. So much fun to be had with her best big sister, Annabelle, and mom and dad… and truly anyone who meets Immy.
“You know, Immy is just like the most amazing little girl, but she’s not the only one,” said Beth. “There are so many children with Angelman, and many other disabilities, that just need a chance. Like, get to know them. And then, if you’re looking for a great cause to support there’s just so many out there. So, we have a lot of hope for the future, but we also have a lot of joy in the present.”
