Before the first of Jennifer’s two sons was born, everything was going according to plan. But immediately following his birth, her newborn son Michael (MJ) experienced some complications. It baffled doctors who ran numerous tests, culminating in a nearly 5-month long NICU stay.
Eventually, even the genetic results came back normal. With no clear diagnosis at their fingertips, the medical team gave Jennifer the only term that they had for her son’s unexplainable symptoms: Cerebral Palsy (CP).
She was understandably upset, but also grateful to have an answer to hold onto. She knew of CP. She thought she might even be able to manage it. She was adjusting to this different future with MJ when she found out she was pregnant with his soon-to-be younger brother, Christian.
“Once again, the pregnancy and delivery were normal,” Jennifer told us. “But after, his APGAR score (used to assess infants after delivery) was lower and he made some of the same posturing movements with his hands that MJ had done.”
Christian was also sent to the NICU. It was like history was repeating itself. This terrible recurrent nightmare that Jennifer couldn’t seem to wake up from.
“After Christian was taken out of the room, I just sat by the window and cried,” she said. “It was like a scene from a movie - it was even raining - and I was so heartbroken and scared.”
A lot of things happened in the following weeks. Big moments like undergoing more genetic testing and small moments like sleeping for longer stretches of time, tightly swaddled in a tiny isolette. In that same span of time, the family was referred by their neurologist to the HudsonAlpha Institute for Biotechnology - an exceptional center for more advanced genetic testing.
“Several months went by, but they finally called and said, “Listen, we found a couple of things - all on mom,” said Jennifer. “Meaning me.”
It wasn’t cerebral palsy. Jennifer’s sons had inherited a rare x-linked genetic condition called Cabezas syndrome. So little is known about it that its page on the Genetic and Rare Diseases (GARD) information site is almost entirely blank.
What Jennifer knows about Cabezas syndrome she’s learned from MJ and Christian. They’re teaching a lot of other people about it, too – including many doctors and specialists. The disease doesn’t even present the same for both of them.
MJ has a prominent facial structure, wider smile, partial complex seizures, and is very tall.
Christian has no seizure activity, but does exhibit short stature, a common marker for the condition.
Both experienced suck, swallow, and breathe issues and later required g-tubes. However, Christian can eat by mouth now, and MJ has recently shown an interest in doing the same.
They’ve really been working hard and making huge progress.
We asked Jennifer about what they like to do these days and her answers made us laugh. Christian is obsessed with the movie Sing 2 and could watch it back-to-back-to-back if she would let him. He also loves playing with his toys.
MJ, on the other hand, prefers watching America’s Funniest Home Videos and sumo wrestling. Must be an older brother thing…
One thing they definitely have in common is their love for travel. Jennifer’s husband’s family all live in California, and it’s really important to them to spend time together. Unfortunately, traveling across the country with two medically-fragile children plus their wheelchairs and medical equipment is daunting, to say the least.
(They also have a third little brother named Elliot, now three years old, and a 19-year-old sister named Victoria. Let’s just say it would be a full vehicle.)
So a few months ago, Jennifer’s dad was at an expo in Georgia when he came across a booth for a company called AMS Vans, an industry leader in accessible vehicles. After talking with the team a bit, they asked him if he’d heard of Chive Charities.
“My dad called me and said, you need to look into this organization,” Jennifer explained. “So that’s exactly what I did.”
Jennifer applied for help for her sons, requesting a wheelchair-accessible van from Chive Charities that could accommodate the whole family. With the incredible support of our monthly donors, we were able to fully fund the cost of the van from our partners at AMS Vans. The total impact was $49,790 – and a chance to travel the country again.
When we met Jennifer, we asked her what she would say to the people who donated to make this van possible for her family. She paused for a moment and said:
“I’ve always loved Mr. Rogers. My grandpa reminded me of him, so I’ve been a lifelong fan of his. Mr. Rogers said that when bad things are happening in the world, there’s a way to keep it from being too scary. He said, ‘Look for the helpers. You’ll always find people who are helping.’”
“You - the donors and team at Chive Charities - are my helpers. I’m forever grateful for you.”
When it comes to Chive Charities, you don’t have to look far to find people who are helping. For MJ and Christian, a whole world of opportunity just opened up. That’s all thanks to the helpers like you.
There will be bad things happening in the world, and it will sometimes feel way too scary. But when you need to be reminded of the good, look back at the hundreds of recipients whose lives have been forever changed because of Chive Charities and our donor family. Here, you’ll always find the helpers. Become one of them today and DONATE HERE.