Over­com­ing the odds

Fam­ily shares story of baby born with limb de­for­mi­ties

The Compass - - FRONT PAGE - BY MELISSA JENK­INS

When Lo­gan Wil­liams was born in the spring of 2014, doc­tors told his par­ents he would never stand or walk, and likely never move his arms.

But Janie Deer­ing and Gordie Wil­liams, who live in Salmon Cove, re­fused to give up on their blond-haired, blue-eyed baby boy.

Di­ag­nosed with arthro­gry­po­sis mul­ti­plex con­genita (AMC), Lo­gan was born with sev­eral limb de­for­mi­ties. His legs were turned with his knees fac­ing back­wards and his feet were twisted. His arms and hands were curved. He had al­most no use of any of his ex­trem­i­ties. Ap­prox­i­mately one in 3,000 ba­bies are born with AMC.

Although most ex­pec­tant moth­ers are no­ti­fied of the dis­or­der when it is de­tected dur­ing an ul­tra­sound, Janie said she was never told. In fact, she only knew af­ter he had been born.

“They said af­ter I had him, ‘I think we should bring him up- stairs,’” Janie said. “I just went white.”

Lo­gan was im­me­di­ately brought to the Janeway Chil­dren’s Health and Re­ha­bil­i­ta­tion Cen­tre in St. John’s, where he was for­mally di­ag­nosed with the dis­or­der.

For 25 days, the fam­ily stayed at Ron­ald McDon­ald House while Lo­gan was at the Janeway.

Gordie de­cided to start re­search­ing. He learned more about Lo­gan’s con­di­tion and tried to find ways that he and Janie could help his progress.

But doc­tors at the Janeway were not op­ti­mistic.

“They said he would never walk,” Janie said.

Mak­ing a plan

Af­ter sev­eral weeks of vis­its with doc­tors and other med­i­cal pro­fes­sion­als, Lo­gan had not made any progress. But Janie and Gordie were not about to give up hope. They wanted to take a more ag­gres­sive ap­proach to en­sure they were do­ing ev­ery­thing they could for their child.

That was when they came across the Shriners Hos­pi­tal in Mon­treal, which pri­mar­ily deals in or­tho­pe­dic is­sues in chil­dren.

Janie called and told them the sit­u­a­tion. It was the Fri­day of a long week­end in July, and the staff had gone. She was told they would call her back next week, but she was skep­ti­cal.

“I didn’t think they would call back,” Janie said.

But they did, and im­me­di­ately set up a con­nec­tion with the lo­cal Shriners to make ar­range­ments for Lo­gan’s first visit.

Shriners cov­ers the cost of flights for the pa­tient and one care­giver to Mon­treal, so when­ever any­one else trav­els — plus ad­di­tional ac­com­mo­da­tions — the costs come out of pocket.

Shriners help

Af­ter Lo­gan’s ini­tial as­sess­ment, the doc­tors asked for him to re­turn for four or five weeks for surgery and treat­ment. Janie brought her old­est child Lilly with her and Lo­gan to Mon­treal.

For three weeks he was get­ting se­rial cast­ing, where they would re­po­si­tion his feet and re­cast for sev­eral days, then re­peat the pro­ce­dure.

When Lo­gan had the surgery to re­lease the ten­dons in his feet, Gordie flew up with their other son Lu­cas.

Since then, the par­ents al­ter­nate go­ing to Mon­treal with Lo­gan ev­ery two weeks. They have made 33 vis­its to date, a sec­ond surgery to al­low his knees to bend took place, and his casts were re­moved. He will need another surgery and will con­tinue to wear his leg braces as long as they are needed.

Meet­ing with other peo­ple in sim­i­lar sit­u­a­tions has helped the fam­ily. Lo­gan’s new friend Dal­las and her mom Jac­que­line Car­rier from Saska­toon are also pa­tients of Shriners. His fam­ily ap­pre­ci­ates hav­ing them around.

Progress

Now 14 months old, Lo­gan has made sub­stan­tial progress.

Janie shared a photo of him stand­ing up by him­self hold­ing the fam­ily’s ot­toman a cou­ple of weeks ago.

“May not be a big deal to most par­ents, but this is another ac­com­plish­ment for Lo­gan,” the cap­tion read.

Since the be­gin­ning, the fam­ily has been do­ing ag­gres­sive and con­sis­tent phys­io­ther­apy and stretch­ing with Lo­gan. And he is get­ting more ag­ile and can now feed him­self.

Gordie ex­plained they are de­ter­mined to beat the odds and show the first doc­tors who said he would never walk that with per­se­ver­ance and hard work, there can be re­sults.

“I’m hop­ing by like age four or five, Lo­gan is go­ing to be walk­ing,” he said. “I’d like to see him walk into kinder­garten.”

“Of course I would love him to walk and be able to do his daily care,” Janie added. “Also I want him to be com­fort­able with him­self and not fell dif­fer­ent from his peers, to have good self con­fi­dence.

The next step is a cus­tom­ized pe­di­atric walker, which is not cov­ered by the province’s Med­i­cal Care Plan (MCP). But they haven’t given up hope.

“We will do what we can to make sure ev­ery­thing that can be done for Lo­gan is,” Janie said. “He’s worth it.”

Rais­ing aware­ness

The fam­ily gets asked a lot of ques­tions about Lo­gan’s con­di­tion. That is why when June 30 was pro­claimed Arthro­gry­po­sis Aware­ness Day in New­found­land and Labrador, they were ex­cited to share Lo­gan’s story.

“I de­cided to open up about Lo­gan to help ed­u­cate peo­ple on AMC and help them un­der­stand what he deals with from day to day,” Janie ex­plained. “And we are so happy to re­ceive the com­mu­nity sup­port we have been. We are so thank­ful.”

Some of the most com­mon things that Janie and Gordie get asked in­clude whether Lo­gan will ever walk, is he in pain and when will the trav­el­ling end.

“Only time will tell,” Gordie said about walk­ing, although they have high hopes. “And he’s not in pain.”

Janie added that the travel may not be over for a very long time, depend­ing on Lo­gan’s progress. He can be a pa­tient of Shriners un­til he’s 21.

“We will do what we can to make sure ev­ery­thing that can be done for Lo­gan is. He’s worth it.”

Janie Deer­ing

PHOTO BY MELISSA JENK­INS/THE COM­PASS

Lo­gan Wil­liams, who has arthro­gry­po­sis mul­ti­plex con­genita, has been stand­ing with the as­sis­tance of sta­tion­ary ob­jects around the house for a few weeks, af­ter be­ing told he would never stand.

PHOTO BY MELISSA JENK­INS/THE COM­PASS

It has been a year of ups and downs for the fam­ily of Lo­gan Wil­liams of Salmon Cove, who has arthro­gry­po­sis mul­ti­plex con­genita. Mem­bers of his fam­ily are, from left, Lu­cas (brother), Gordie (dad), Lilly (sis­ter), Janie (mom) and Lo­gan.

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