Liam was born with severe spinal muscular atrophy (SMA). The disorder affects Liam’s nerves and muscles. The little boy can’t walk, stand, or sit without support. At age 10, he travels in a stroller. Due to muscle weakness, he has trouble swallowing. Mom or Dad must regularly suction the saliva from his mouth to prevent him from choking.

Any parent can tell you going on vacation with kids takes planning. But imagine the logistics, not to mention the luggage, when you are going on vacation with a physically challenged child who depends on medical equipment to survive.

Despite these challenges, Liam is a happy chatterbox. He has a wicked sense of humour and loves to laugh. He picks up languages quickly and is fluent in French and English. Liam also likes to sprinkle his sentences with words from other languages. When he grows up, he would like to be a movie producer or an astronaut.

“Emmanuelle, Liam’s mom and I decided not to let Liam’s condition limit us. We will discover the world with Liam and his big brother,” said Liam’s dad, Yan. Dad loves to travel and discover new cultures.

Road trip!

On top of packing shorts, t-shirts, and sunblock, Liam’s parents pack medical equipment, including a portable ventilator. They bring along Liam’s special stroller and his medications. Liam is on a special diet and most of the ingredients aren’t available at the grocery store. Mom and Dad need to be sure to bring enough food for each of Liam’s meals. Liam is on an approved treatment for SMA that he takes once a day, the medication must remain cold. Plus, don’t even ask about the cost of medical insurance.

The family is going on a 12-day road trip to Orlando, Florida, this summer. They will stop in New York City and Washington Beach. Before they leave, they will carefully research all the children’s Hospitals along their route in case Liam has a medical emergency. They also bring along a copy of Liam’s medical file. While the family hasn’t had to rush to the ER during previous family vacations, Yan prefers to be safe rather than sorry.

While they are headed to Orlando, Disney World is not the ultimate destination. They will attend the annual SMA conference. There they will meet hundreds of families coping with the disorder. They will also learn what is new in terms of care and research. And yes, a trip to see Mickey and the gang and to try the rides is part of the plan.

Travelling with Liam is familiar to the family. They have gone camping and on various trips around Quebec. At 14 months, Liam took his first of several plane trips to Mexico.

"We know the trip to Orlando will be a busy time for us. Truthfully, we are a little worried and stressed, but it's good to get outside our comfort zone," says Yan.

No cure

Today, there are three approved drugs that prevent the progression of SMA. Families in Quebec are fortunate to have access to all three medications which are most effective if started early. SMA has been added to newborn screening programs across the world, and in June 2022 the Quebec health minister announced the addition of SMA to the Quebec NBS panel. We’re hopeful that over the next months, this program is launched in Quebec to help children born with SMA reach their best potential.

The Children’s Director of Neurology Dr. Maryam Oskoui is a world-leading expert in SMA and a senior FRQS clinician-scientist. She leads INFORM SMA, a research network with patient partners funded by CIHR. Dr. Oskoui has brought key SMA clinical trials to Quebec so that children like Liam can benefit from potential breakthrough treatments.

More tips and advice

If your child has complex care needs, check out the website co-developed by The Children’s to find advice including tips for travelling: complexcareathomeforchildren.com