Donations helping child go to Disney World
Thanks to an online fundraising campaign, a little boy with a progressive and terminal genetic disorder will get to go to Disney World with his family in December — and attend a conference for families dealing with the same illness.
“If we don’t do it now, he probably won’t have another chance,” said Ashley Riggs, of Minot. “That’s what pushed us to start the fundraising. It’s kind of a now-or-never thing for him.”
Riggs’ son, Landon Stack, 7, loves Buzz Lightyear and all things Toy Story. Like most boys his age, he likes being active — jumping up and down, playing on balancing equipment and swinging.
His teachers at the Anne Carlsen Center have to keep a close eye on him while he does those things, though, because Landon has Sanfilippo syndrome.
According to information on the National Library of Medicine’s website, Sanfilippo syndrome, also known as MPS III, is a metabolism disorder passed down through families in which the body can’t break down certain chains of sugar molecules.
A person with Sanfilippo syndrome lacks the enzymes that break down the cellular wastes, the wastes build up and cause damage to the brain and the rest of the body, Riggs explained, likening the illness to “childhood Alzheimer’s.”
Most people with Sanfilippo syndrome live to be 12 to 15 years old, she said.
The chances of being born with Sanfilippo are about 1 in 70,000, but if parents both have the gene related to the illness, each child has a 25 percent chance of developing it. Both of Landon’s parents have the gene.
Landon was diagnosed with the illness four years ago. One of his brothers, Blake, 4, also has Sanfilippo syndrome, along with severe autism. Landon’s other brother, Gabriel, 9 months, is not affected.
“In North Dakota there are three known diagnoses of MPS IIIA, and two of them are my children,” Riggs said.
Because of Blake’s autism, he likely wouldn’t enjoy Disney World, Riggs said, and therefore isn’t going, but both Riggs and Sharon Olson, Landon’s special education teacher at the ACC, expect Landon to do well there and have fun.
Having familiar faces in the form of his family members will likely help, Olson said.
Because of his illness, he does tire easily, and sometimes his balance can be off, Olson said, but he’s also very active, very busy and has a fairly brief attention span. He likes to play with sticks, and anything stick-shaped, like brooms, pens and markers, too.
“He really likes to draw,” said Kevin Larson, a full-time substitute teacher at ACC who sometimes works with Landon in the residential area. “He’ll make all kinds of lines, and a variety of colors.”
Landon is also inquisitive and loves food, particularly pretzels, beans and Oreos.
“He’s a delight, fun to work with,” Olson said.
While Landon has never spoken, and seems to be developmentally about 18 to 20 months old, he can communicate with others using picture boards or an iPad.
“The way we will get him ready for the trip is to use pictures — Buzz Lightyear and Woody and the castle, and the kids that will be there,” Riggs said.
For the adults, though, the major focus of the trip is going to be the 28th Annual Family Conference of the National MPS Society.
The conference includes time with other families dealing with MPS, meetings with doctors about finding new therapies and treatments and support groups helping people handle the emotional elements.
“I think it will be crucial for the family to meet other families,” Olson said.
In order to go to the conference, Riggs asked for donations at www.gofundme. com, with a goal of $5,000. That goal was met in 11 days and then exceeded, with 67 donors contributing $5,772 in a single month.
“I never really expected that. I never imagined we’d hit that, it’s unreal,” Riggs said.
Riggs plans to use the extra funds to enhance Landon’s experience at Disney World with special events that cost extra, like having a character breakfast with Mickey and Minnie Mouse.
“We’re very fortunate to know some very caring people, and many donations came from people that we do not know at all,” Riggs said. “It really cements my belief that there are, despite what’s going on in the world today, some really caring people.”
Riggs hopes her family’s experiences will help others become more aware of Sanfilippo syndrome.
“Even if it brought one person to google it, that helps,” she said.
For more information on Landon and his family’s fundraiser, visit www.go fundme.com/a0skjg.
For more information on Sanfilippo syndrome, visit mpssociety.org.
Sun reporter Kari Lucin can be reached at (701) 952-8453 or by email at firstname.lastname@example.org