A Nevada boy hopes to make it home to celebrate his golden birthday.
But that all depends on how things go for Jayden Robinson with a surgery he’s scheduled to have on July 9 at University Hospitals in Iowa City.
Jayden, 13 and about to be 14 (on July 14), is having surgery to correct a malformation in his brain and a syrinx of the spinal cord.
Basically, his father Tim explained, “his brain is growing out of his skull into his spinal cord and this causes a lack of fluid that creates cavities in his spinal cord.”
Bambi, his mother, said it has to be fixed and fixed quickly. She said they were lucky to find it on a doctor visit, rather than having things start to go wrong — like severe headaches, back pain, problems with fine motor skills and so forth, and not understanding why.
Jayden has already faced health challenges in his young life. He was born a condition called neurofibromatosis, which he inherited from his father.
“It’s little cysts on nerve endings, both inside and outside the body, that can affect your development and learning,” Tim explains. But the disease, of which the Robinsons have all had Type I, affects everyone differently. Tim had no real problems from it, but his son has had some issues.
Jayden has ADHD, along with a learning disability called “non-verbal learning disability,” which his mother compares to Asperger’s syndrome.
Jayden went in recently for a genetics doctor appointment in Iowa City, something his mom just felt he needed at this particular time to see how he was doing, and that’s when the doctor discovered scoliosis in Jayden and ordered MRIs of his brain and spine to find out what was going on.
“That’s when they discovered the malformation in his brain and the syrinx,” his mother said, and in one week’s time, Jayden and his parents had to stay in Iowa City and meet with several different specialists, and everyone concurred surgery was needed — the sooner, the better.
“We’re told [his surgeon] is one of the best,” Tim said, and Tim, who works in the warehouse and doing deliveries for Plumb Supply in Ames, and Bambi, who is a patient services representative for Story Medical in Nevada, both plan to be with Jayden in Iowa City for what is supposed to be about a week, following the surgery, if all goes well. Their daughter, Jayden’s sister Skylee, 11, will be going to stay with her grandparents during that week; and the family’s two cats, one of which is a diabetic and needs shots, will need to go to some type of boarding place.
The Robinsons have lived in Nevada since July of 2008, and one of the friends they made just this past year in their neighborhood, Dane Nealson, has turned out to be an incredible friend. “He reached out to us right when he found out (about Jayden’s surgery and stay in Iowa City) and said, ‘What can we do?’” Bambi said.
What Dane and his wife, Monica, decided to do what hold a benefit to help the family with the cost of medical bills, travel back and forth to Iowa City and other needs. “Jammin’ Out For Jayden” is planned for Friday, July 20, as a dance party and silent auction to raise funds. With George’s Bar, 1220 Sixth St., agreeing to be the venue, Nealson will provide the music with his own business, “U Can’t Beetus Entertainment.” The cover charge will be a free-will donation, all going to the family. The silent auction will begin at 7 p.m.; the dance party will begin at 8 p.m. Those who can donate silent auction items may contact Nealson at 515-639-0244 to do so.
Having someone willing to do this for them, Jayden’s parents say, is a bit overwhelming.
“I feel blessed; I do,” Tim said. “Here are people you know and people you don’t know who are willing to help you out. People (who find out about this) will say, ‘Oh, I’ll pray for him.’ There are still some really good people out there.”
Bambi concurs and mentions that they also have good neighbors. One of their neighbors, she said, gave them the proceeds of a garage sale they had. Those came from Steve and Becky Ogden, whose daughter Nicole lives in the house next to them. “We’re just really fortunate,” she said of the friends they have.
Tim will spend some time away from work, being the caretaker for Jayden when they return home. He doesn’t know how long Jayden will need to have his care, but he’ll be taking time through the family medical leave act without pay, so having help from friends is something this family is not taking for granted.
Jayden, who just finished seventh grade in Nevada, isn’t really nervous about his upcoming surgery, but he does say he’s not going to be happy if he’s still in the hospital on his birthday. He’d like to be home to celebrate it.
His parents smile. That would be a small price to pay in their minds for a surgery that their son really needs. They feel blessed to live in Nevada — they say the schools have been so wonderful and accommodating to their son that it’s part of the reason they stayed living here. And now, people are doing this.
If Jayden celebrates his birthday in the hospital, the entire family hopes he’s well enough so they can all attend the benefit together on July 20. It will be a chance to greet friends they know and new friends they haven’t met, and they are very grateful for the opportunity.