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Leo

Leo was diagnosed with Wiskott-Aldrich Syndrome (WAS) days after he was born. We knew there was a 50% chance he would have this gene as I, his mom, found out I was a carrier while pregnant. I know a lot of people wonder, what exactly is WAS? WAS is so rare and has only recently been understood by modern medicine. Wiskott-Aldrich Syndrome is so rare that Leo is literally our “1 in a million”. It is an x-linked genetic mutation which affects the functionality of the immune system and platelet count. Some mutations are worse than others and they present very differently in every boy.

 

For Leos first two years, he appeared to be a healthy strong little boy, but he had critically low platelets. The average platelet count is 150-400. Leo’s platelets sat around the 10-20 range. That put Leo at a high risk for internal/external bleeding. He was often covered with bruises and petechia from even the slightest falls. We tried different medications and weekly injections to boost his platelets but to no avail.

 

My husband, Tanner, and I knew we wanted to give Leo the very best life he could have. With a lot of questioning, stress, guidance from highly qualified medical professionals, and some pressure; we decided to go forward with a Bone Marrow Transplant. Making the decision to move forward with transplant was extremely stressful and exhausting. There were many tears, sleepless nights, doctors appointments and research.

 

On November 21st we were admitted into unit 1 at the Alberta Children’s Hospital in Calgary to begin the process. We didn’t have a clue what to expect. Leo began at day -7 of conditioning (chemotherapy) and he got his bone marrow Transplant on November 29th (day 0). Leo was a warrior throughout it all, even on those really hard days where he experienced all the side effects of chemo and the anti rejection meds. It was heartbreaking to watch Leo experience such pain and sickness and have Leo tell us he was sad.

 

We have moved our lives to Calgary until day 100 (minimum) while they monitor him closely. We have watched his levels fluctuate and are just praying to see some numbers climb over the next while proving that he engrafted his donor cells. We don’t know the selfless angel on earth who donated their cells to Leo, but we are eternally grateful for their kindness.

 

I truly believe Leo is a Wiskott warrior and I love watching him embrace life and overcome this hard time. As Jelly Roll said in an award acceptance speech, “the windshield is bigger than the rear view mirror for a reason;” this journey is far from over but we are happy to be moving forward with Leo.

 

We are also grateful to have followed another little warrior’s story, Jack, who had the same diagnosis and went through a BMT in 2022. His mom, Leslie has been an irreplaceable source and support to me.

 

Jack has given us a lot of hope as we navigate through this journey and I hope one day I can do the same thing Leslie has done for me.

Life is an absolute journey, full of highs and lows, but it’s amazing how resilient kids are.


Leo is a Wiskott warrior.



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