Liams MPS Journey

There have been people asking to donate to our gofundme, so we've created one. The funds raised would be for Liams care/treatments and the Canadian MPS Society. Funds will cover additional expenses when we need to move to Calgary for 3 months for the transplant as well as any other equipment we will need as we continue to navigate this new path set before us. Excess funds beyond what is actually needed will go to the Canadian MPS Society.

On October 15, 2020 we got the news that our son, Liam was diagnosed with a rare genetic disorder called Mucopolysaccharidosis 1 (MPS1) aka Hurlers Syndrome. It is where his body does not produce a specific enzyme meant to break down proteins and sugars, which then end up being deposited throughout his system creating a multitude of serious health concerns and death by age 5 There is no cure. Liam requires weekly enzyme replacement therapy through a central line called a Broviach. He also needs a Bone Marrow Transplant to stop any developmental delays, blindness, and premature death. We are currently waiting for a donor, and are on a strict time-line  as the transplant needs to occur asap (before his 2nd birthday) to prevent his death. 

I am a nurse in Wetaskiwin, and I have had to give up my position  and benefits, and drop back to casual work only, so that I can work around my sons schedule with all his doctor appointments and enzyme treatments. My husband is a grain farmer and volunteer firefighter in our wonderful little town. And it has been very difficult having to navigate covid restrictions during emergency calls and keeping our son safe. 

Thank you, Diana.