Noth­ing can get Lan­don down

South River fam­ily pledges to fundraise for son’s rare con­di­tion

The Compass - - FRONT PAGE - BYMELISSA JENK­INS

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.

Fundrais­ing

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.

Photo by Melissa Jenk­ins/The Com­pass

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.

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