Some families receive an Angelman syndrome diagnosis and ask, what now? Thomas and Johanna Kennedy received theirs and asked, how big can we dream? That question has carried them from a diagnosis they refused to accept at face value to a wedding built around advocacy, and now to the start line of the Dublin Marathon, all in the name of one little girl who refuses to be underestimated.
Meet Anabella
"Anabella is the heart of our family, our first baby and the light of our life," Thomas says. Born at the tail end of the COVID lockdowns in 2021, she has since become a favorite everywhere she goes. "Her warm smile and hugs bring love from all around."
Diagnosed at two years old, Anabella was handed the usual list of expectations and has been happily proving people wrong ever since. She recently started walking down the stairs without support, and her parents dream of the day she can dance and sing the Macarena, her favorite song. "She tries the moves but just can't piece it all together." Yet.
A Wedding Built Around "Dream Big"
"Our wedding day was the happiest day of our life," Thomas says. Their children mean everything to them, and Anabella had a starring role: flower girl.
Their advocacy showed up throughout the day. The FAST ethos, dream big and don't accept what you're given, matters so much to Thomas that he had the words "Dream Big" sewn into his wedding jacket, next to his heart. "To dream big on our wedding day felt like the right thing to do," he says. "Anabella represents so much of what is good in the world: happy, persistent and caring. I wanted that so close to my heart." QR codes pointed guests to the family's marathon fundraiser. The couple even staged a two-person protest outside the prime minister's office, a stand against the delays facing rare-disease drug approvals across Europe.
Even the best man's speech turned to Anabella and brought the room to tears. "Life will give you challenges," he said, "but it is how one deals with them that is the making of the person." Others talked about the everyday hurdles the family faces, and the hope they all share: that Anabella will one day be able to live independently.
Team Kick-AS: Running for a Cure
On October 26th, 2026, Thomas and Johanna will both line up for the Irish Life Dublin Marathon as part of Team Kick-AS. It's the first marathon for both, and they're running alongside their close friend Milo.
Their hope for the marathon is twofold: to raise awareness about Angelman syndrome and raise money for Angelman syndrome research through FAST.
And there's room for you to join them. There are still FAST bibs available for the Dublin Marathon, and the Kennedys would love to have more runners on Team Kick-AS. Every runner and every donation brings treatments closer for Anabella and people living with Angelman syndrome like her.
Join Team Kick-AS Dublin: give.cureangelman.org/event/team-kick-as-2026-irish-life-dublin-marathon
Be Inspired, Then Start Your Own
The Kennedys would be the first to tell you that you don't need a wedding or a marathon to make a difference. You need a reason, and if you're reading this, you already have one.
Whether it's a bake sale, a sponsored walk, a birthday fundraiser, or your own race bib, every effort moves us closer to therapeutics for our kids. The Kennedys turned a diagnosis into a movement. What could you turn yours into?
Ready to dream big? We can help. Reach out to Krista Nanigian to get started.