We named our son Wyatt, which means “Brave in War.” This name was chosen for our baby boy before we even knew what a true warrior he would become.
Wyatt was born on January 16th 2019 and we immediately fell in love with him. He came 4 weeks early, but was otherwise perfect. We were completely overjoyed with the arrival of our first-born son since it took us so long to finally become parents.
The first few weeks were a blur as we were getting to know this new tiny human. Wyatt was so small, born weighing only 5lbs 9oz at birth. Over the next few months, the stress only intensified as we were told that he was falling off his growth curve. Was he eating enough? Maybe try formula, we were advised. Wyatt continued to fall off the growth chart and was deemed failure to thrive. We feared something might be terribly wrong.
At 4 months, Wyatt received the diagnosis of having an Atrial Septal Defect (ASD), which is a small hole between the top atriums in his heart. We were told this was most likely why he wasn’t feeding well and falling off his growth curve. Our cardiologist wasn't convinced that the problem was just with his heart, so in the next 2 months, Wyatt saw a respirologist and gastroenterologist. Wyatt had tests done for his breathing and digestive system, however, the tests came back normal and neither of the specialists could explain why he wasn’t growing and had feeding issues. Our baby continued to get worse and we were so desperate we took him to emergency at McMaster Children's Hospital.
We were hopeful that we could find a solution; maybe he just needed a feeding tube like some more severe cases of ASD. We could handle that. The diagnosis we received was a bombshell that no one could ever have anticipated. Wyatt was diagnosed with Spinal Muscular Atrophy type 1 (SMA) and most babies with SMA don’t live past the age of 2. Our entire world shattered. We just sat there, held each other, and cried. The possibility our baby boy being taken away from us was incomprehensible.
Spinal Muscular Atrophy is a horrific genetic disease that causes the nerve cells in the spinal cord to die. As a result, Wyatt’s brain and all his senses will remain intact, but his muscles will lose the ability to communicate with the rest of his body. Overtime, his muscles will break down, initially causing him weakness, possibly followed by full paralysis, and worst-case scenario, the inability to talk or breath. Type 1 refers to early onset in infancy, usually displaying symptoms by 6 months like Wyatt. It is the most common form, accounting for about 80% of cases, and sadly the deadliest. Less than 3 years ago there was no treatment available, and 95% of type 1 children would die before their second birthday.
We were living our absolute worst nightmare. Would we ever get to run and play with our son? Hear him say "I love you?" See him grow into an adult? How can we possibly watch our perfect baby boy’s body wither away trapping him inside?
Thankfully there was a new treatment called Spinraza that would help fight Wyatt’s battle against SMA. Spinraza is a medicine that was recently approved to slow the progression of SMA. We are so grateful to have this treatment available to us and covered by OHIP. By combining Spinraza treatments with lots of occupational physio and nutritional supportive care, there was finally hope for us. Wyatt’s doctors felt they could not predict what his life would look like down the road, but they no longer viewed death as an imminent threat. Our flame of hope was ignited, and there’s a chance Wyatt might even reach motor milestones such as sitting, rolling, crawling and maybe even walking.
After 4 weeks in hospital, Wyatt was finally discharged home. He had received his first dose of Spinraza, and also had surgery for the placement of a gastrointestinal (feeding) tube. However, the battle had only just begun, and our weeks at home have become filled with visits to and from occupational therapists, dieticians, developmental specialists and doctors.
On May 23, 2019 the FDA approved a second treatment for SMA called "Zolgensma." This one-time treatment is an SMN-enhancing therapy that works by replacing the missing/mutated SMN1 gene. Zolgensma is a type of treatment that is often called gene replacement therapy. It is the closest thing to a cure. Unfortunately, Zolgensma is currently only available in the US and is extremely expensive at nearly $2.8 million Canadian dollars. There has been no application to date to have this miracle drug brought to Canada, and yet it is only approved for use before a child's 2nd birthday. We feel we are now also in a race against time and funding to get him this drug before it's too late.
Wyatt and all babies suffering from this disease deserve access to this drug. They deserve the best possible chance of fighting against a terrible disease that threatens to trap them in their bodies before they have had the chance to explore this beautiful world. With a longing we didn't know was possible, we hope one day Wyatt can dance to the beat of his favourite song, send our hearts racing as he climbs a high tree or wrestle with his dad on the floor.
Wyatt has proven himself to be quite the little warrior, living up to his name, but we NEED YOUR HELP!
We need an army to back Wyatt in his battle against SMA. All donations will go directly towards the cost of the Zolgensma and other medical needs such as therapy and future medical equipment. We are beyond grateful for any donation we receive, big and small.
We also ask that you share his story and consider posting a photo, video or story about your children doing something that brought a smile to your face with the hashtag #sowyattcantoo
on Instagram or Facebook for updates.https://www.instagram.com/bravewyattsma/
Our Facebook page is Brave Wyatt SMA
We appreciate you taking your time to hear our story.
Christine and Brandon Vasey (Wyatt's parents)