At just two years old Tristan Laidlaw is already seen as a ìvery special boy.î
Like any other child his age, he can be hyperactive and curious. He loves animals, trucks, trains and especially his six-year-old sister Taylor.
And when the time is just right, a soft tweet from a bird foraging through the rigours of winter outside will trigger giggles of wonder and joy.
But times are not always right with Tristan. He has challenges, serious challenges. Every day Tristan battles a neurological degenerative disorder that is connected to or similar to cystic fibrosis (CF), a devastating disease that affects the lungs, pancreas, liver, intestines, and sinuses.
But his condition is considered by many specialists to be decidedly different from CF because tests don't show the same telltale signs commonly associated with the disease, like pancreatic insufficiency. As a result Tristan can't be legally classified as having CF. In fact there is no name for his condition.
But parents Tara and Trevor do know their son's affliction is exceedingly rare.
ìTristan is a one in five million child to have as many different issues wrong with him at the same time,î said Tara, noting her son must take up to 30 medications a day, sleep with oxygen tanks at night, and be on a strict diet and bowel schedule. The little boy's treatment includes seeing a dozen specialists in Calgary, Red Deer and Edmonton, including a neurologist, allergist, immunologist, audiologist, pediatrician and speech therapist.
While doctors continue the treatment, and debate among themselves the name of Tristan's condition, his lungs are constantly filling with mucous. They have to be continually drained. He needs oxygen at night. The mucosal lining around the nerves in his brain is thickening. His receptors are unable to receive messages. As a result he is at his tender young age legally deaf. His motor skills are also diminishing. Slowly he will lose his speech and eyesight.
Early next month Tara and Trevor are taking Tristan to Edmonton for the first of at least six surgeries they hope will be a path to the best life possible for their young son, despite the seemingly impossible odds.
The prognosis for Tristan appears grim. He is facing a worst-case scenario of living only another 15 years.
ìAnd a good chunk of that would be in the hospital,î said Tara. ìIt could be up to 23 years and if things work out with medical advancements, and they are having advances every day, he could live longer.î
The upcoming phase of Tristan's treatment will add a significant financial challenge to the family, who are also increasingly relying on private health care for their son's ongoing care.
ìMost of the specialists he sees now are still in the public health system,î said Tara. ìThere are a couple of specialists we do pay for that are private. We made that decision that we would rather put some money into it to speed it along. We are not upset with the public health-care system in any way, but this is just our choice.î
The family already spends hundreds of dollars out of pocket each month for the special care Tristan needs, and the upcoming surgeries in Edmonton, with all the extra expenses that will come -- including for travel, will add a huge extra burden.
ìWe are financially stressed, physically and emotionally and mentally stressed as well,î said Tara, who is on leave from her instructor's job at the Innisfail Aquatic Centre.
But help has come. A fundraiser for the family is being planned at the Fox and Hound on Saturday, Feb. 22.
Kristen Spatz, night manager at the sports pub, said a silent auction will be held to raise money for the family.
ìThey are in dire need of help. I've had two different people come up to me and ask to help them,î said Spatz.
While the young boy's future is uncertain, Tara and Trevor, a Red Deer construction worker, are firmly committed to providing Tristan with a life that is as normal as possible.
ìWe don't want him labelled as the sick kid,î said Tara. ìHe can be very active. When he is having a good day he is a normal two-year-old boy and he will destroy your house in about zero point two seconds.
ìAnd he loves the trains. We hear every train that goes by. And he absolutely loves his big sister,î she added. ìHe is a very special boy.î
For more information on the Feb. 22 fundraiser for the Laidlaw family contact Spatz at 403-227-2333.
