Clarenville man with CF look­ing for the ‘gift’ of a sec­ond chance of life

Jamie Chaulk awaits new lungs in Toronto

The Packet (Clarenville) - - FRONT PAGE - BY DANETTE DOO­LEY SPE­CIAL TO THE PACKET danette@nl.rogers.com

Fam­ily and friends of Jamie Chaulk are ral­ly­ing around the Clarenville man and his move to Toronto while he awaits a dou­ble-lung trans­plant.

Jamie has Cys­tic Fi­brous. More com­monly known as CF, the disease is the most com­mon fa­tal ge­netic disease af­fect­ing Cana­dian chil­dren and young adults.

Jamie is from St. John’s. He lives in Clarenville with his part­ner Perry Chaulk who is from Char­lot­te­town, Bon­av­ista Bay.

The cou­ple has been in Toronto since mid-April.

“Jamie is cur­rently ad­mit­ted at St. Michael’s hospi­tal in down­town Toronto for treat­ment for an in­fec­tion that he’s de­vel­oped since we got here,” Perry said when an­swer­ing ques­tions via text mes­sage on May 4.

Ac­cord­ing to the Cys­tic Fi­bro­sis Canada, the disease has var­i­ous ef­fects on the body, but mainly af­fects the di­ges­tive sys­tem and lungs.

Perry said Jamie’s lung func­tion has now de­creased to 19 per cent which, he said, is “su­per low.”

Both Jamie and Perry are self­em­ployed and had to put their busi­nesses on hold while they await the trans­plant.

“Hav­ing to pay rent, and ev­ery­thing that goes along with a house­hold, ve­hi­cle pay­ments, in­surance etc, has been rough be­cause we have liv­ing ex­penses here as well,” Perry said.

Perry said he and Jamie have re­ceived an over­whelm­ing amount of sup­port from peo­ple in the Clarenville area, as well as other fam­ily and friends and even strangers. They also have a strong sup­port sys­tem in Ontario, he said.

“Peo­ple can be beyond gen­er­ous and we can’t thank them enough.”

Natasha Bai­ley from Har­court has been friends with Jamie and Perry for sev­eral years.

“Jamie’s lung func­tion has de­te­ri­o­rated a lot this past cou­ple of years. He just has to stay in Toronto now un­til lungs be­come avail­able,” Bai­ley said when con­tacted by phone.

Bai­ley said her friends need all the sup­port they can get right now, both emo­tion­ally and fi­nan­cially.

“This could be up to a two year process. It’s very hard on ev­ery­body in­volved. It’s very tir­ing for them,” she said.

Kelly Shep­pard has es­tab­lished an on­line fundrais­ing cam­paign to help Jamie and Perry with their ex­penses. The cam­paign has raised al­most $10,000 thus far.

“I’ve been through this same process that Jamie and Perry are fac­ing. I had to up­root my fam­ily and re­lo­cate to Toronto from NL in 2008 to wait for my sec­ond chance at life. For­tu­nately, af­ter only two months wait, I re­ceived my ‘gift’, and just three months af­ter that I was able to travel home,” Shep­pard wrote on the Go Fund Me page.

What most peo­ple don’t un­der­stand, she wrote, is the cost that trans­plant places on fam­i­lies and in­di­vid­u­als.

“Yes, our health care is free in Canada. How­ever, the cost of ac­tu­ally re­lo­cat­ing to Toronto, re­sid­ing there... meals, trans­porta­tion back and forth to the hospi­tal (for the nu­mer­ous ap­point­ments and re­hab re­quired) all of these costs are our own to bear. And where does that leave our lives that we left back at home in NL,” she wrote.

Ac­cord­ing to Eastern Health’s web­site, about 4,500 Cana­di­ans wait for or­gan trans­plants every year. Sadly, some peo­ple die while wait­ing.

Perry en­cour­ages peo­ple to be­come or­gan donors.

You can in­di­cate your in­tent to do­nate or­gans and tis­sues when com­plet­ing a Med­i­cal Care Plan (MCP) ap­pli­ca­tion or re­newal.

How­ever, ac­cord­ing to in­for­ma­tion posted on Eastern Health’s web­site, although you have in­di­cated your in­tent to do­nate your or­gans and or tis­sues, the fi­nal de­ci­sion rests with your next of kin.

Be­cause tim­ing is crit­i­cal with or­gan do­na­tion, the web­site notes, it’s im­por­tant that peo­ple dis­cuss their wishes with their fam­i­lies.

In sum­ming up her rea­sons for set­ting up the fundraiser for Jamie, Shep­pard said it’s im­pos­si­ble to place a price tag on the joy and ex­cite­ment of be­ing given “a sec­ond chance and be­ing able to breathe.”

“This is my one wish for Jamie,” she wrote.

To con­trib­ute to the fundraiser visit www.gofundme. com/jamies­newlungs.

For more in­for­ma­tion about or­gan do­na­tion call 709-777-6600, toll free 1-877-640-1110 or visit www.east­ern­health.ca and fol­low the link to Or­gan Do­na­tion.

To learn more about CF visit www.cys­tic­fi­bro­sis.ca

CON­TRIB­UTED PHOTO

Perry and Jamie Chaulk in the hospi­tal.

CON­TRIB­UTED PHOTO

Jamie and Perry Chaulk.

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