As bad as 2020 was for most people, it was unimaginably awful for Caleb and Carrie Fowler’s family.

That was the year their then-5-year-old daughter Haidyn was diagnosed with a rare neurodegenerative disease called Sanfilippo syndrome.

That rather obscure name doesn’t ring a bell with most people, but a more common term for the disease sends chills down every parent’s spine.

“The best way to describe it is … childhood dementia or childhood Alzheimer’s,” Haidyn’s mom, Carrie Fowler, told Good Morning America in 2022.

Since her diagnosis, Haidyn has steadily deteriorated. As a preschooler, she had been able to walk, run, and bounce on a trampoline. But those days are long gone. Haidyn not only lost her mobility, she has also lost her ability to speak.

“There is no cure or treatment,” Carrie Fowler told GMA. “It is 100 percent terminal.”

After the diagnosis, Haidyn’s parents were advised “to just take her home and love her,” Carrie Fowler said.

Along with her physical condition, the family’s financial situation went rapidly downhill, as well.

“We sold our home, moved into my in-law’s basement initially to build our own home, but turned into being able to survive financially, and have been doing our best to raise our girls while facing endless medical bills, the rising costs of everything since 2020, and the weight of a one-income household,” she said.

“We’ve run through our savings just trying to make it through,” Carrie Fowler wrote on a GoFundMe page.

But recently, a situation developed that “tugged at our hearts,” she explained.

A charming little log cabin just behind Caleb Fowler’s parents’ home became vacant when the owner passed away.

“His family is preparing to sell the property: a two-bedroom, two-bath cabin on five acres, with a ramp already built — a detail that feels like it was meant for Haidyn and her wheelchair,” Carrie Fowler said.

Taking out a mortgage would be out of the question for a family in their situation. “The only way this dream could become possible is if the home is fully funded,” she said.

So last weekend, they held their breath and set up a GoFundMe appeal asking for donations to buy the property in Cedartown, Georgia.

“The asking price will likely be between $350,000 and $375,000. It feels impossible to even write that number and swallowing my pride to share this is one of the hardest things I’ve ever done, but I believe in being honest about where we are,” Carrie Fowler wrote.

“This home represents something we haven’t had in years: peace, privacy, and a place of our own. It would allow us to stay connected to Caleb’s parents through the woods, remain in the community we love, and give both of our daughters the stability they deserve.

“Our oldest will be heading to college next year, and the reality of how much harder things may become with Haidyn’s needs has been heavy on our hearts.”

The response to their $400,000 goal has been impressive. As of Thursday morning, $157,188 had already been raised in just a few days.

“That number is overwhelming,” Carrie Fowler wrote in a Facebook post Tuesday, when the total stood at $128,341.

“[N]ot because of the money alone, but because it represents thousands of people who chose to say yes. Yes to our story, yes to Haidyn’s dignity, yes to helping us create a home of our own after six years of living in a beautiful basement that was so graciously offered to us with open arms, by family. We quite literally do not know how we would have made it, without them.”

The responses haven’t all been kind and loving, however.

“Alongside that support, there have also been cruel comments,” she said. “People who question why we would ask, or who say hurtful things about our family. People who don’t or won’t understand why this feels so sacred of an ask, for us. Those words cut deep because asking was already terrifying.”

She conceded that it’s not the first time the family has asked for help. They’ve reached out before when there’s been a need for medical equipment or a service dog. They’ve also participated in fundraising appeals for Sanfilippo syndrome research.

“Each time, I’ve put down my pride and asked because LOVE required it,” Carrie Fowler said. “This is no different, only bigger. And the response has proven something that I’ll carry forever: the good outweighs the bad.”

It’s certainly not the cheapest property they could obtain, but it is uniquely suited for them, as it is already adapted for a wheelchair patient and situated adjacent to Caleb’s parents.

She described the family’s dream of once again having their own place for Haidyn to live and be lovingly cared for by family — and eventually, a place for her to die.

“What we are asking for is a modest home, close to family and community, where Haidyn can live out the remainder of her life,” Carrie Fowler said.

“Whether that’s a year, five years, or more • in peace, privacy, and dignity. A place that we won’t have to leave behind (even if it’s family).. A place she can pass peacefully in and we can grieve together, in complete privacy.”

She thanked the nearly 5,000 people who have donated and sent messages of support.

“Thank you to every single person who has given, prayed, or shared,” she said. “You are proof that asking isn’t wrong. It is how miracles are born and villages are built.

“I will carry this overwhelming gratitude for the rest of my life. Thank you for loving my family.

“One day, when we make it out of the trenches, we will pay it forward in every way we can. I promise.”

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