Evan's Story

Age: 10-years-old

State or Country: Canada

Date of Diagnosis: May 2022

What is the hardest part of your day? There are a ton of things that are hard, but so many more that are joyful and full of blessing.  Along with all of Evan's challenges has come the purest manifestation of happiness, the most enduring display of perseverance and a love for life that can’t be taught.  To witness this in one human being day after day when they have been dealt an unfair hand, can only make you see the good.  

What does your child struggle with? Evan’s biggest struggle is frustration when he can’t get his point across.  Evan has had to rely on non-verbal communication but we are happy to say that he does an amazing job of this.  At 10, his words are few but he still tries and we are finding new words every day.  

What brings your child joy? Evan is a sports fanatic!  He loves anything that involves a ball, stick or bat.  We were told when he was at the one year mark that he would likely never walk, so when at 25 months he took his first steps we were elated.  He hasn’t stopped running since! Evan also has a strong love of horses.  Lucky for him this love is shared by myself and his older sister so there is lots of opportunity for him to hang out at the barn and play with the ponies.  

What do you hope for your child? Just like everyone else my hope is that this disease can be cured in Evan’s lifetime but ultimately I hope he never loses his joy.  I hope that life for him is happy and pain free.  He has taught us so much about love and life in the short time he’s been with us, we pray for many more years of the same.