Nothing can get Landon down
South River family pledges to fundraise for son’s rare condition
The smile on Landon Whalen’s face lights up the living room in his family’s South River home on July 2.
“He’s always smiling,” his mom Michelle tells The Compass during an interview, returning a smile to her five-year-old.
Landon is playing on the floor enthusiastically, but pauses to look up at The Compass reporter who stopped by to meet him.
“Hello, what’s your name?” Landon asks, in a muffled tone, smile still on his face.
Landon is on his knees. It is difficult for him to walk without some assistance and he will soon need a walker, and possibly a wheelchair. Neither is covered by the provincial Medical Care Plan (MCP).
At the age of three, Landon began to demonstrate changes in his mobility, which was noticed by Michelle and his dad Lee. Finally, on April 25, 2014 they received Landon’s diagnosis — Fatty Acid Hydrozylase-associated Neurodegeneration (FAHN).
FAHN is a sub- classification within a family of rare genetic neurological disorders called Neo-degeneration with Brain Iron Accumulation (NBIA).
The disorder is so rare less than 30 people have been diagnosed in the world. Each case is different, and the progression is completely unknown. Some lose the ability to walk, some lose their vision and others can develop issues chewing or swallowing. Some experience seizures.
It leads to the deterioration of myelin (white matter) in the brain and spinal cord, causing electrical impulses in the body to slow, leading to decreased motor function and affects brain function.
Landon is the only confirmed case in Canada.
A study from the University of Washington says the lifespan of someone with FAHN can be in their early 20s to 30s, but with limited cases to study, there is no accurate age.
There is also no cure, but physical therapy and homeopathic medicine have been included in Landon’s treatments. Neither have been proven to stop progression, but his parents say they’ll try anything for their little boy. Worth the wait The Whalen family has spent a lot of time doing research and attending doctors’ appointments.
At first, some doctors believed Landon had spastic paraplegia, a genetic disorder of progressive weakness and stiffness in the legs. So his parents had him referred for genetic testing.
The wait to see the specialist was a year, but Michelle said she didn’t mind because it led to a diagnosis.
“Receiving the diagnosis was the most difficult part,” she explains.
At that point, Michelle and Lee pledged to do what they could to help their son.
Michelle, Lee and brother Logan are all carriers for the genetic mutation. Both parents need to carry it to pass it along to a child.
Getting other opinions
Although they believe they are in good hands at the Janeway Children’s Health and Rehabilitation Centre in St. John’s, where Landon goes for speech therapy and to see his neurologist, they decided to get a second opinion.
Michelle applied to have Landon considered for a visit to the Shriners Hospital-Canada in Montreal, a hospital who specialize in orthopedic and neuromusculoskeletal conditions. The cost of the trip for the patient and one parent is covered by Shriners.
“I’ve heard Shriners perform miracles, and I thought, ‘ You never know,’” she says . “And when I applied, I didn’t know what Landon had.”
Landon was assessed and approved. He then flew to Montreal with his mom and aunt, Melissa Walker, on June 26. Lee stayed in South River with Logan.
The Shriners confirmed the family is in the right hands at the Janeway, which gave Michelle some peace of mind.
“Shriners was an awesome experience,” Michelle explains. “(We) got a second opinion and a little more guidance on Landon’s condition.”
But that was just the beginning. In September, the Whelans are hoping to take Landon to an NBIA specialist in Oregon, Dr. Susan Hayflick, a leading expert in rare genetic disorders. They are hoping to find more answers, and hopefully take advantage of any new advances in treatment that may become available.
The cost of Landon’s walker and wheelchair could range from hundreds to thousands of dollars. But the biggest cost will be the trip to Oregon.
Michelle, Lee and some friends organized a fundraiser comedy event at West Side Charlies in Bay Roberts June 19, where comedians, including local funny man John Sheehan, volunteered to take part.
The event, Laughs for Landon, sold out, raising almost $6,000.
Michelle hopes it will become an annual event. In fact, she also wants to host three or four fundraisers a year, one for Landon’s expenses, the other three to help fund research.
Other donors have come forward as well.
Landon’s new school, All Hallows Elementary in North River, donated $450, while ScotiaBank in Carbonear held a barbecue, raising some $700, among others. What’s next? Michelle and Lee are continuing to living life day-by-day, without worrying about what may happen next.
“It’s not easy,” Lee says. “We just keep thinking there will be a cure down the road. You know, stay positive.”
He adds he chooses to put his frustrations into fundraising and research. Landon doesn’t yet have a walker, so that is the next step. He does use leg braces, but not all the time.
“I’d like for him to keep on his legs as much as possible,” Michelle said. “But if he can’t, we’ll have the wheelchair.”
Although they don’t know what will happen to Landon, they cherish every moment the family spends together.
Just before The Compass reporter leaves, Landon holds Michelle’s hands and walks back and forth across the front walkway. When she pauses for a moment, he pushes her to keep going, and he is smiling.
For more details on Landon’s condition, or others similar, visit www.nbia.org.
The Whalen family sits on their front step July 2 in South River. Members of the family are, from left, Logan, Michelle, Landon and Lee.