We’ve all faced the tragedies, losses, and disappointments. Sometimes, they seem to pile up on top of each other until you get to the point where you just have to laugh about it; otherwise, you’d be curled up on the couch, miserable in your own misery. (Which is also a totally acceptable response in its own right).
It does beg the question: If you knew there would be dark days ahead, would you want to know about them ahead of time? To plan? To prepare? To come to terms? Or would you simply try to take each day as it comes?
Chris, the dad to a beautiful girl named Alyson, decided he needed to know. Alyson’s mom had a family history of Huntington's disease, a rare, inherited condition that causes the progressive breakdown of nerve cells in the brain. It’s, for lack of a better word, horrific.
Typically, individuals with adult-onset Huntington’s (the most common form of the disorder) will begin showing signs and symptoms in their thirties or forties. It includes things like irritability and depression along with involuntary movements, poor coordination, and trouble making decisions. Individuals with the adult-onset form usually live about 15 to 20 years after signs and symptoms begin.
Alyson’s mom had tested positive for the disease. When she became pregnant, the pair decided to conduct in-utero testing to determine if their baby also carried genetic markers for Huntington’s. She was tested again after birth, and the results came back positive.
“About 250,000 people are at risk for Huntington’s disease,” Chris explained. “10% of that group could have the juvenile form. Out of that 10%, 30% have epileptic seizures. Alyson has the juvenile form, and she also has seizures. So she’s the rarest of the rare.”
Like many with Juvenile Huntington’s, behavioral issues came first, followed by loss of motor control. Affected individuals usually live 10 to 15 years after signs and symptoms appear.
Alyson was just seven years old when she became symptomatic. She’s 17 years old today.
Tragically, her mom passed away from complications of Huntington’s disease five years ago. But luckily, she’s had her dad Chris by her side every step of the way.
“Alyson loves to pick on me,” Chris joked. “She’ll tell me it’s time for me to get out of the house, but then a few minutes later, she’s asking me to watch a movie with her and snuggle up on the couch with our dog, Evie.”
Not unlike a typical 17-year-old girl at all.
Some of her favorite things are having girl nights, watching movies - especially Harry Potter, cooking shows, and reading books. Once she started having seizures, Chris would get her out of the house by taking a drive and stopping at the Starbucks drive-thru so she could get her favorite cake pops. Then, if she was feeling up to it, they would keep driving until they got to New Smyrna Beach, where they’d park right on the sand and watch as the ocean waves rolled in.
It’s a fitting scene because the ocean played a large role in Chris’s life long before Alyson was born. He served for 18 ½ years in the U.S. Navy, and while he never served on a boat (“Everyone asks me that,” he laughed), he was inspired to join because of the travel opportunities, noting his time in Hawaii as the favorite of his career.
But once Alyson was born, his priorities changed. She became the center of his world, the most important aspect of his life.
Later, they relocated to Florida, an odd sort of foreshadowing as Tampa General Hospital is widely regarded as one of the best treatment centers in the country for Huntington’s disease.
“She and our dog, Evie, are the bosses of our house,” he told us. “Even with the dog, we were only supposed to watch him for a few months, but the owner went to Canada before Covid and was unable to come back when they closed the border. She was gone for over a year, so we kept taking care of him, and eventually, Alyson asked if we could keep Evie. The owner agreed, and now here we are…with both of them bossing me around.”
It’s clear that Chris has kept his sense of humor, something we noted with him on the call. He gave us a quick smile and paused for a moment before saying, “I have to put humor behind it. It’s serious - this disease is life-threatening - but we have to stay light. If you don’t, it’ll just eat you alive.”
He’s doing all he can to give her the brightest, happiest moments that he can. He’s seen what Huntington’s can do, and he’s well aware of what his daughter is facing. But if he stays positive, she stays positive. So those Starbucks cake pop outings and drives to New Smyrna Beach stay on top of the list. It makes her happy, so it makes him happy.
But as her disease has progressed, so have the challenges with transportation. Before they met people like you and Chive Charities, Chris was physically lifting Alyson in and out of the car. Now that she’s 17 and fully wheelchair-dependent, that’s gotten more difficult.
So not too long ago, he began doing a quick internet search to see if there was anyone out there who might be able to help them. Purchasing a $50,000 van of their own was out of the question…but did that mean their ocean trips had to be out of the question, too?
Not if we could help it.
With the generous support of our Green Ribbon Fund members, we fully funded the cost of a wheelchair-accessible van for Alyson and Chris from our friends and partners at AMS Vans. They received a black 2019 Dodge Grand Caravan for a total impact of $47,079. New Smyrna Beach, here they come!
Though Chris and Alyson understand more of what the future holds, though they know there will likely be more valleys than peaks, they still look for humor and joy in every moment they can.
“If you don’t laugh, you’ll cry,” Chris said. “And frankly, we’d rather laugh.”
Because of this community and your support, we have a feeling there’ll be a lot more laughter happening soon. And, at the very least, there’ll be a sparkling new Dodge van gracing the beaches of east Florida, complete with a smiling teen and spoiled dog visible through the window – and a dad who loves them both.
Thanks for being part of it with us. To help more like them, DONATE HERE.