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Help Jack beat Wiskott Aldrich Syndrome

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My name is Melissa and my coworkers name is Alanna. We work with Leslie as nurses at the Children’s Hospital in Saskatoon. We are reaching out to the community, friends, family and colleagues of Leslie and Phil Duval to offer support during their medical journey with their son Jack.

Jack was diagnosed with a very rare gene mutation called Wiskott Aldrich Syndrome (WAS). This rare genetic condition is classified by thrombocytopenia (low platelets), immunodeficiency and eczema. Normal platelets range from 150-400. Jack’s platelets have been as low as 3 and as of late have been consistently in the single digits. This has caused numerous presentations such as skin rashes, excessive bruising, petechiae, GI bleeds, blisters between his fingers and toes, blisters in the mouth, tongue, nose bleeds when he cries, and numerous other symptoms. The doctors have tried multiple approaches, transfusions and immune therapy medications in hopes of stabilizing his condition enough to delay what seems to be an inevitable bone marrow transplant. To date they have been unsuccessful in achieving anything that works consistently.

Jack also has no ability to fight infection. Prior to his official diagnosis he was given a drug called Rituximab. The job of this drug was to completely wipe out the immune system in hopes that it would reset. It was thought that Jack’s immune system was attacking his own platelets and that giving the Rituximab would stop it. Unfortunately, the infusions did not work and have left Jack severely immunocompromised and vulnerable to infection. This coupled with his critically low platelets resulted in the doctor advising them to avoid sending Jack to daycare for fear of contracting even a simple cold that could land him in the hospital for weeks. Having a toddler with WAS requires care that goes way above and beyond. They live in constant fear of every trip, scrape and fall that can cause a severe bleed. A simple fall can be catastrophic for Jack.

The list of Jacks restrictions goes on and the hardships Leslie and Phil are facing right now are many-far too many. We want to provide the Duval family with peace of mind to care for Jack the way he needs to be cared for. We want to provide some financial stability so they can focus on his care. If all goes well, Jack will receive a bone marrow transplant that will require them to stay in Calgary for a 3 month minimum while he recovers and even then he will require continued care. Leslie and Phil need to be by Jack’s side without having to worrying about how to make mortgage payments or how to make ends meet while their baby is fighting this disease.

Jack has endured more medical trauma in his one year of life than most adults will experience in their entire life. Well over 100 IV attempts, more pokes for bloodwork then I’m sure his Mom and Dad can count. Not only has Jack endured a lot, but so have Phil and Leslie. I can’t imagine what they are facing everyday, trying to be strong and brave for Jack but also being so scared inside. I see the stress taking a toll on their precious little family.

If you are able to show your support, please click on the donate button and help us reach our goal. If you are unable to help, please share a message of encouragement and keep them in your prayers.

Donations 

  • Chris Turple
    • $50 
    • 2 yrs
  • Brett and Chelsey Redden
    • $100 
    • 2 yrs
  • Graham Henricks
    • $100 
    • 2 yrs
  • Bert Graham
    • $300 
    • 2 yrs
  • Nourish Health Food Store
    • $194 
    • 2 yrs

Fundraising team (3)

Melissa Sedgewick
Organizer
Raised $2,116 from 29 donations
Saskatoon, SK
Leslie Duval
Beneficiary
Carmen Buschow
Team member
Raised $1,595 from 20 donations
Alanna Franey
Team member
Raised $1,400 from 15 donations
This team raised $29,936 from 270 other donations.

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