Meet Malakai: How Bear Essentials has given this Sooke family peace of mind
On a typical day, you might find Island kid Malakai swimming, listening to music, or laughing with his parents. Described by his dad, Joshua, as a joy to be around, six-year-old Malakai has an infectious laugh and his own way of communicating.
In 2014, Joshua’s wife, Nicole, was rushed to the hospital for an emergency C-section more than a month before her due date. When it was clear that their baby wasn’t breathing, doctors delivered chest compressions, trying to get his little lungs to open. After almost half an hour, baby Malakai took his first breath.
It quickly became clear that Malakai had myotonic dystrophy, a condition that causes general muscle weakness, as well as cerebral palsy due to lack of oxygen during his birth. After four and a half months on life support in the NICU, Malakai slowly learned to breathe on his own and was taken off the ventilator. He was able to go home.
Supporting Malakai’s development
Since then, Malakai has faced ongoing health challenges as a child with complex needs. He requires equipment to be fed, a breathing machine while he sleeps, and uses a wheelchair due to his case of myotonic dystrophy. And while he is non-verbal, Malakai’s bright and sunny personality is clear to every person he meets.
“His low muscle tone means he struggles to keep his lungs open. Over time, it will slowly get worse and worse. Thankfully, we have a high flow breathing device that he uses at night to help keep his lungs open,” says Joshua.
Last summer, Malakai had double hip surgery to correct his bone formation. Because he can’t stand or walk on his own, his bones were growing straight instead of in a hockey stick formation, his hips were out of joint, and the socket was not forming properly.
Even though the surgery went well, severe complications meant that Malakai had to stay in the hospital for two and a half long months, during which he lost over a quarter of his body weight.
“Being home in self-isolation is a total vacation compared to last summer! Malakai has regained all the weight he lost during that time and is doing amazing these days,” says Joshua.
How Bear Essentials helps Malakai
Thanks to the support of Bear Essentials*, the Fast family has been able to purchase a power generator that ensures that Malakai’s life-saving equipment will continue running, even during the frequent power outages that happen in their community of Sooke.
“We live close to the ocean, so it gets quite windy and stormy. All the power lines are above ground, so when a tree takes out a power line, we’re without power for days. Malakai has a machine that helps him breathe at night, suction equipment, and feeding equipment. We can’t have those machines go without power. That would be devastating for him,” says Joshua.
For the Fast family, being able to access equipment like the generator through Bear Essentials has made all the difference.
“A lot of Malakai’s equipment is covered, but the equipment that is not and might seem like ‘extras’ to others is essential to his survival. The peace of mind that has been offered by having a generator is huge for our family. It’s been such a blessing.”
You can help Island kids with complex needs like Malakai access the essential equipment they need. Will you help bring peace of mind to Island families by making a gift to the Kids First Fund today?
*Bear Essentials is a program powered by both Children’s Health Foundation of Vancouver Island and Help Fill A Dream.