Charlotte father of three hoping for a second miracle this Christmas following ALS diagnosis
His wife says "Derek is still daddy" despite the enormous challenges he suddenly faces.
A Charlotte area family is hoping for a miracle this Christmas after a devastating diagnosis for a young father of three.
But the family says they may be shut out from their best hope for help because of a cruel twist of fate.
'An earth-shattering day'
In November 2021, Amber and Derek Ingram brought home their youngest, baby Elle, to meet her older sister Kate and brother Beau. Elle was just three days old when the couple had to visit the hospital again for a very different reason.
“It was earth-shattering, a day we never want to relive," Amber remembers. "Our youngest was three days old so we took our newborn baby in tow to get literally the worst news we could be given.”
Young father of 3 diagnosed with ALS
Amber, a school teacher, and Derek, who worked in architecture went to the doctor after noticing some weird things.
“In the middle of throwing the ball with Beau in the backyard he realized he could no longer close his glove,” Amber said.
Derek remembers, "I’ve had this baseball glove forever so when I put it on and realized that I couldn’t squeeze or open to catch a ball, it was very weird."
That devastating diagnosis? Derek has ALS – a nervous system disease that weakens every muscle and impacts one's ability to move and talk. The effects can come on fast.
'Derek is still daddy'
The disease has moved very quickly and Derek is now forced to use a motorized wheelchair. His speech can be difficult to understand because he has trouble moving his mouth.
“I have very little movement in my left arm. My right arm can move a little,” he explains about what’s left of his body that he can control.
He can’t hold Elle.
“She’s way stronger than I am," Derek said. "She’s a wiggle worm.”
Amber adds, “Neurologically, Derek is still daddy.”
But there is so much he can no longer do with his kids and for them, and that’s the hardest part of the disease.
“Yeah, it’s impossible to even think about, much less talk about,” Derek says, getting emotional.
At age six, Beau knows things are different.
“He asks lots of questions, he wants to understand why daddy’s muscles don’t work like they used to,” Amber said. “He knows that daddy is different but he also is just thankful to have a daddy who loves him so much.”
“I try to be involved as best I can,” Derek adds.
He is still at every game but it isn’t easy. It takes Derek and Amber working together – and a pole now a fixture in their temporary living room – to move him from his power chair to a lounge chair.
Keeping hope alive
While there is no known cure for ALS, the couple is trying everything – experimental treatments, anything that might slow the disease-- or if they’re really lucky, turn back the clock and reverse some of Derek’s symptoms.
“We are not going to give up hope, we are going to continue to fight and do literally whatever it takes to keep him here.”
But they’re running into another challenge. Derek also has a rare bile duct disorder that four years ago required a liver transplant to save his life.
“I was not expected to make it when I went into the emergency room.”
Incredibly, he woke up from the surgery perfectly healthy thanks to his new liver- but the medication he has to take as a transplant patient makes it difficult for him to be accepted in clinical trials for his ALS.
“We need someone to say hey, this guy has beat the odds once before, let's help him do it again," Amber said.
They are hoping a Duke University doctor who has reportedly had some luck in reversing symptoms for ALS patients will take him on.
Until then, they refuse to give up.
“We have way too much to live for, our kiddos are worth the fight, our marriage is worth the fight, we are determined to win and we’ll continue to celebrate all the moments- we have to hold on to the normal stuff- those normal little things are the big things for us."
In the meantime, the family has gone through their savings trying to make their home wheelchair accessible for Derek and they're hoping to buy a van that he can actually ride in without amber having to lift him into it.
Friends have set up a GoFundMe for them if you’d like to help.
Contact Michelle at mboudin@wcnc.com and follow her on Facebook, Twitter and Instagram.