Fundraiser planned Sunday for Mitchell boy with rare diseaseAside from a slightly swollen belly and a pale yellow cast to his skin, you’d never know little Charlie Beckstrom is awaiting a life-saving liver transplant.
By: Candy DenOuden, The Daily Republic
Carl Beckstrom used to check “no” on the organ donor question.
“This has obviously changed that. I wish I could donate to you,” Carl said to his 7-month-old son, Charlie, as he sits in his high chair, awaiting another spoonful of applesauce.
Aside from a slightly swollen belly and a pale yellow cast to his skin, you’d never know little Charlie Beckstrom is awaiting a life-saving liver transplant.
He giggles when his older brothers surround him to tickle his belly. He chews on his socks as he sits on the table in front of his mom, Sarah, in their Mitchell home. He moves just as his father tries to put a spoon to his mouth.
“I think he’s acting pretty normal for his age,” Carl said.
There will be a free-will offering breakfast benefit from 9 a.m. until 1 p.m. Sunday at the John Paul II School Gym in Mitchell. Carl and Sarah said the school called to see if it was OK to hold a benefit to help them defray medical expenses — just another way the community has “overwhelmed” the Beckstroms with support in a difficult time, they said.
“Everybody’s been amazing,” Sarah said. “My mom always says, ‘We are the hands and feet of Christ,’ and that has become really apparent to me through these events. It’s brought tears to my eyes several times.”
“We look forward to a time we can give some of that back,” Carl said.
The need for a transplant is a result of Charlie’s condition, Alpha 1 Antitrypsin Deficiency, a rare disease where the body doesn’t make enough of a protein that protects the lungs and liver from damage. Because it hampers the liver’s functionality, it can prevent a person from being able to absorb the nutrition they need from normal foods.
It’s so rare, in fact, that neither Sarah or Carl had heard of it prior to being told in September that their son had it.
“I had to make them write it on the white board at the hospital,” Sarah said. “It was completely out of left field.”
Unbeknownst to the Beckstroms prior to Charlie’s diagnosis, both Carl and Sarah are “carriers,” meaning they carry the condition but suffer no symptoms.
“It’s very rare for two carriers to marry each other,” Sarah said.
With many complicated medical and genetic factors taken into consideration, their combined dispositions created a 1 in 4 chance for their children to have Alpha 1; Charlie is No. 4.
Carl and Sarah knew something wasn’t right with their youngest by his skin tone, and asked about it at his six-week checkup. Several tests, doctors, hospitals and “I don’t even know how many ultrasounds,” brought to light the particulars. It was a two-sided revelation for the parents.
“It was good to put a name to it,” Carl said. “That’s the part that’s nice. Then you start finding out everything that’s involved … It’s pretty heavy.”
Because the condition prevented Charlie from gaining weight on a diet of mother’s milk, he soon adopted a regimen of specialized formula, four medications and, possibly his favorite part of the day: one meal of “real food.”
“I think that’s why he’s so happy when he eats,” Sarah said.
In fact, he’s a happy baby in general, smiling and laughing often as his parents and brothers talk — which his parents said was not the case prior to being diagnosed.
“He’s a completely different baby,” Sarah said.
But he’s still a little small for his age, and not gaining like babies should, or “failing to thrive,” as Sarah quoted from the medical community.
Due to that, and with the discovery that his spleen was also enlarged, specialists recently agreed that Charlie unequivocally needs the transplant.
“It was on our horizon that a transplant was a possibility, but it progressed quickly,” Sarah said. “We kind of had this four-week gap where we could just be normal for a while.”
Charlie was added to the transplant waiting list on a probationary period of sorts in January, and to the “official” list earlier this week.
Now, they wait.
“In the day and age we live in, we can get whatever we want right away, but this … It’s not going to be quick and it’s not going to be soon,” Carl said, of the waiting and of the procedure’s after effects.
Sarah said she was struck one night when one of her other sons, Henry, prayed in his 6-year-old sincerity for someone to “die soon” so his baby brother could have his transplant.
“It’s like you’re praying for someone else’s nightmare,” she said.
Even though the transplant will cure Alpha 1, Charlie will then take anti-rejection medications for the rest of his life. “I want it to happen, but I don’t want it to happen,” Sarah said. “You just don’t know how it’s going to turn out.”
Once the call comes in, Sarah said she will have 6 hours to get Charlie to the University of Minnesota in Minneapolis for the procedure.
“They basically said, ‘You just need to drop everything and go,’ ” Sarah said. After the transplant, she and Charlie will have to stay in Minnesota for least a month.
Sarah has started packing what she can to prepare, toiletries, etc., and said friends and neighbors have volunteered to help with the boys while she’s away. Her mom, who lives in Worthington, Minn., will stay in Mitchell with her other sons, Aiden, 9, Henry, and Jack, 3.
“That’s just a huge stress for me, knowing I’ll have to be away from my family,” Sarah said. “I’ve just really tried to stay in the now.” Carl agrees, saying they try to focus on “normal” family activities: meals together, book reading, prayers at bedtime. “We just kind of enjoy the time together,” Sarah said. “Hold (Charlie) a lot more than usual.” “Stuff doesn’t get done,” she added with a laugh. Charlie starts to fuss a bit, perhaps feeling neglected since his mom is preoccupied. Sarah immediately hugs her baby boy, turning so their faces touch. She wrinkles her nose as he gives her a long, openmouthed, sloppy baby kiss.
“I think I got some tongue,” Sarah said with a smile.
“That’s my boy,” Carl quips, eliciting a laugh from his wife. Charlie, satisfied that he’s still the center of attention, gives a sunny smile, then returns to sucking on his blue socks.