Robert and Peter Nelson of Negaunee play video games and sports, and they spend a lot of time running around the house with their five-year-old sister, Aili, but the twins were born with a rare genetic condition called Beckwith-Wiedemann Syndrome.
“It causes overgrowth of certain body parts, the tongue in particular, and this can cause speech deficits, orthodontic problems, social problems because they’re unable to keep their tongue inside their mouth,” the boys’ father, Brandon Nelson, said.
Their mom, Tina, was also born with it and had a tongue reduction when she was 20.
“It hasn’t been too unusual for me,” she said. “It hasn’t been too much like ‘oh my gosh! What is this?’, like a lot of parents who have a child with Beckwith Wiedemann. It’s completely new to them. They don’t know what it is. They don’t have the experience, but we kind of knew going into this what we were going to have to deal with.”
Dealing with it has often meant advocating for the boys to physicians.
“It’s been a lot of, when we are looking for a physician, ‘how much do you know about the syndrome?’, and sometimes, I’m the one who has to tell them a little bit what it is,” Tina said.
Robert and Peter had surgery in Ann Arbor five years ago, but it was unsuccessful. Their parents searched for another option and eventually found the only doctor in the country specializing in Beckwith-Wiedemann tongue reduction surgery for kids. He practices in Missouri, and he was willing to operate, but he’s retiring before the end of the year.
In August, Tina brought the boys to Mercy Hospital in St. Louis for a second procedure. It went well, and Robert and Peter are recovering nicely. That’s the good news.
The bad news is, the Nelsons’ insurance carrier refused to cover the procedure and the hospital demanded payment up front.
“The hospital quoted us less than what they wanted when my wife got there,” Brandon said. “They said that $10,000 per child would be what would be needed to get going with the procedure, but when we got there, they wanted more than $26,000. They wanted it that day and they wouldn’t negotiate a payment plan.”
The couple has set up an online fundraising campaign to help offset the large loan they had to take out. More than $15,000 of community support has come in so far.
“We’re going to keep fighting for them, and as long as it takes, we’re going to keep fundraising and we’re going to take care of this.”
Robert and Peter are going to keep fighting during their recovery as well. You can visit the Nelsons’ GoFundMe page by clicking here.
Anyone interested in making a donation who might be more comfortable giving offline can also mail it to the following address:
1300 N 3rd St
Marquette, MI 49855
ATTN: Tina Nelson
There will also be a benefit concert for the boys on Saturday, September 27 at 7:00 p.m. at the L’Anse Baptist Church.