Kelel with his big brother Dominick. Kelel has already been medevaced four times.

Caring for baby Kelel

A family's financial burden has become too much to bear alone after baby Kelel's genetic disorder diagnosis.

Four-month-old Kelel’s home has been turned into a triage centre. Equipment just to keep the boy named after Superman breathing and feeding fills the Smithers home dad Joe Bramsleven describes as a “bubble,” quarantined from illnesses from visitors that would be fatal.

Kelel has a rare genetic disorder: spinal muscular atrophy (SMA). He has Type 1, the harshest diagnosis that carries with it a life expectancy of one to two years. Survival beyond the third year is very rare. It takes 24-hour care to keep Kelel alive.

We are the only ones north of Hope, in the whole of British Columbia, that have it,” said Bramsleven.

He pointed out that both parents need to be carriers of the gene. There was no way to know he and mother Tammy Wilson had it, and both parents have unaffected children from previous relationships.

Born on July 31 at BC Children’s and Women’s Hospital, Kelel immediately had to be brought back to life. After doctors saved him, tests had to be done to figure out why Kelel was “floppy.” Six weeks later, the genetic test results came back.

Also known as infantile progressive spinal muscular atrophy, according to Muscular Dystrophy Canada it is rare but still considered to be the most common genetic cause of infant mortality. The disease causes paralysis by disconnecting the muscles from the spinal cord.

The effects on the family have been devastating emotionally, physically and financially.

It’s like being tortured 24/7,” said Bramsleven.

I would not wish this upon my worst enemy, no matter what.”

No way,” concurred Wilson.

Kelel is home after spending nearly the first four months of his life at the Children’s Hospital in Vancouver. His parents’ lives are still on hold in many ways; nurses provide some respite but the work that goes into caring for the infant is constant.

You can’t just get up and go to the store. You can’t do anything; you have to be with him,” said Wilson.

It’s a scary disease because you have to monitor his stats every time he gets mucus plugs. You have to suction him out all the time, you get mucus plugs 24/7… chest physio all the time. We could both write our RN exam right now,” said Bramsleven.

Kelel cannot get more than two to three hours of sleep in a row, needing those suctions at least that often. His parents say they can not really even hold him anymore.

It tugs at you every minute of every day spiritually,” said Bramsleven.

Help has come from the community, something the parents kept stressing as they gave high words of praise to the people who have kept them fed and housed in Vancouver and Smithers.

Pastor Ken Vander Horst from Smithers Christian Reformed Church, who has been helping with meals and prayers. Suzy Vandervick from a B.C. SMA support group. Easter Seals, Ronald McDonald House, Canuck Place staff, Fred and Teresa Reitsma at the Sausage Factory, and everyone at Bulkley Valley Christian School were on the long list of people Kelel’s parents wanted to thank.

The highest praise was for Dr. Clarence George Moisey, pediatrician in Smithers.

His heart is massive. He’s just a wonderful, wonderful man. We love him to pieces,” said Bramsleven.

Having a pediatrician in town is important for everyone according to Kelel’s parents.

If Dr. Moisey decides to retire, this town needs and must advocate for a pediatrician… this man takes care of all the children in the district aound Smithers and inside Smithers. This man needs to be recognized as well.

The pediatrician is so important in this community,” said Bramsleven.

We can’t just pick our kid up and drive to Terrace for two hours; it’s impossible,” said Wilson.

We can not be transported. The only type of transportation is emergency evac and ambulance, and you’re taking an awful chance with an ambulance,” said Bramsleven.

Kelel has already been medevaced four times by the Infant Transport Team based in Vancouver. His parents are doing their best to stay strong.

We just tell each other that we love each other every day and that we’ll get through this,” explained Bramsleven.

Being constantly in emergency mode has devastated the family’s financial situation. Bramsleven said after spending so much time in Vancouver, they are “playing catchup.” Rent and electricity bills need to be paid or the lights will be turned off soon. Bramsleven’s company Dynamic Cleaning Services and its eight employees need janitorial contracts.

Account number 430447 at Bulkley Valley Credit Union has been set up by friends of the family to accept contributions. The Facebook group ‘Auction event for baby Kelel’ will be open until Dec. 31.