GoFundMe page raises more than $25K for Sask. boy with rare genetic condition

SASKATOON -

A Martensville family is getting support from the community as their 15 month old son battles a rare genetic condition.

In January, Jack’s parents Leslie and Phil Duval started noticing purple spots on his stomach. In March, Jack was diagnosed with a condition called Wiskott Aldrich Syndrome (WAS). Leslie says the condition has left him with critically low platelets, the average for someone his age is 160 to 400, while his are as low as 3. He also has auto immune deficiencies and eczema. 

Leslie is paediatric emergency nurse at Jim Pattison Children’s Hospital in Saskatoon. Now she has to sit back and be a mom of a patient.

“It’s harder than I thought it would be to sit back and be a mom instead of a nurse,” said Leslie “I definitely have a lot more empathy towards the families that come into the hospital now.”

Since Jack’s diagnosis, the family has been forced to take five extended trips to the hospital. Currently they make weekly trips for blood work and appointments.

“It’s been extremely difficult. The thing with this syndrome he has is there is a lot of unknowns,” said Phil.

The only cure for his syndrome is a bone marrow transplant. 

“It’s hard to sit back and watch your kid go through poke after poke for IVs for blood work,” said Leslie.

The family is trying to stay positive, as their optimistic for a bone marrow transplant in the next few months. When it happens, the family will have to stay sixth months in Calgary.

“It's going to be an uphill battle. It’s not an easy fix.” said Leslie “We have our doctors working really hard right now to try and find the perfect match.”

Leslie and Phil will both have to take time off work to travel for the transplant and their stay in Calgary. A GoFundPage has been launched by friends to help pay for mortage payments, bills, and maintaing two residence along with any medical expenses.

“It’s been incredible to have Melissa and Alanna (GoFundMe organizers) and everybody involved step up for us and help us out.”

In just under two months, the page has raised over $25,000 dollars. 

“We’re just trying to be a force behind Leslie and help her as much as we can,” Alanna Franey, a fellow nurse and friend. “It’s not easy watching one of your close friend and struggle with a child who’s sick.”

For the person who has seen a lot in her five years as a nurse to sick children, she knows the staff, the same ones she still goes to work with, are working hard to ensure her kid, can just be a kid.

“He can go to school, play with friends. We don’t have to worry so much about simple little things.”