From infantile spasms, recurrent seizures, vision problems, physical deformities, feeding issues and ongoing disabilities, Aicardi syndrome is an extremely rare neurological disorder that almost exclusively impacts females.
But nothing can stop Reese D’Ortenzio from being a beacon of joy for her family and community. And thanks to VMI and the selflessness of others, Reese’s world just got a whole lot larger.
“When she comes in contact with people they can sense her love,” her father, Mario, said.
Reese’s life may be different but it allows her to shine like nothing else.
“We’re not always going to understand when she’s on life support or all the tests and the poke and prod,” Mario explained, “but there’s something bigger going on here.”
Now that she’s 6 years old, it’s grown increasingly clear the D’Ortenzios needed to find a solution that would allow their entire family — Reese has three older sisters — the flexibility and function to join the world around them and share their special daughter.
“They get bigger. Equipment gets bigger and it’s a choice between staying home or getting a van,” her mother, Kerry, said. “We are not the only ones. There are thousands of families in this situation. Just having the ability to keep her in her chair and just go, without putting her health or mine at risk, gives us freedom. I’m in this for life, so I can’t hurt my back. I have everyday caregiving to do for her and it’s just as important for us [parents] to stay healthy for her.”
Mario recognized the challenges of transporting his daughter and the family began to pray for an answer.
They were amazed at the result.
The extended D’Ortenzio family set up a gofundme campaign on Reese’s behalf to fund a family wheelchair van. As momentum started to plateau, local news outlets caught wind of the efforts and VMI decided to pick up the tab on the family van and toss in a couple extras.
Adding both remote start and the flexibility of a jump seat to the finished van, VMI was incredibly proud to heed the need of this beautiful family.
“There’s no way we’d be sitting here today without the countless people who have given to the campaign and without VMI,” Mario said.
“To see this come through people who were unselfish, loving and kind is just awesome. It’s humbling and inspiring,” Kerry added. “We’re blessed and she’s blessed.”
In gaining a VMI Northstar E wheelchair van, Reese and her family gain independence. They find options. And living with Aicardi syndrome becomes a bit more manageable.
“When we talk about the future, it’s the three of us. That’s our norm. That’s the reality and we are grateful,” her parents said. “We can pick up all the girls from school and go to the grocery store now. This van gives us the freedom to just be able to go live life. Both the big and little things.”
At VMI, we never forget the challenges faced by our customers. From Aicardi syndrome to caregiving, even veteran needs and ongoing mobility solutions, we imagine possibilities for families like the D’Ortenzios every day.