Jaxon Gauthier (2016)

Jaxon Gauthier is a six year old boy who lives with his family in British Columbia.

He lives with neurofibromatosis type one (NF1) but despite his challenges due to NF1, Jaxon enjoys school and playing with his friends like every other six year old. “He loves playing Lego, colouring, and playing pretend games using his imagination to the fullest,” shares Jaxon’s father, Mike. Jaxon was diagnosed with NF1 when he was just two and a half years old. “We noticed a difference in his walking ability, later to find out he had a leg discrepancy,”

Jaxon receives all his care at BC Children’s Hospital. At the time of his diagnosis, Jaxon also had many café-aulait spots. At the age of five, a large plexiform tumor in Jaxon’s back was discovered. The tumour runs down through Jaxon’s pelvic bone, through the front of his legs, and the back of his thigh, his dad explains. The tumour was causing Jaxon to have severe pain in his leg. The doctors started Jaxon on chemotherapy for the plexiform tumour.

Jaxon also has to take several other medications to prevent the negative side effects of the chemotherapy. He will be having an MRI in February to rule out cancer; which will be determined by the growth rate of the tumour since it was discovered. “This is going to be a very scary time for us, but we are hoping for the best and always looking forward to the future, new treatments, and the ability to hopefully end NF,” Mike shares. “The doctors also noticed a small plexiform tumour on Jaxon’s hypothalamus (a portion of the brain), and a small abnormality in Jaxon’s neck,” shares Mike. Jaxon also has minor scoliosis (curvature of the spine), which is starting to become more pronounced as he grows.

IT HAS BEEN HARD FOR OUR FAMILY TO COME TO GRIPS WITH JAXON’S DIAGNOSIS

Jaxon inherited NF1 from his mother, and several other family members also live with the disorder. “We just want Jaxon to be like the other kids and be able to ride a bike, play soccer, or even just go out for a nice walk without pain,” Mike explains. Jaxon has two brothers, one who also has café-au-lait marks and has also been diagnosed with NF1. “At this time, no other problems have been discovered for Jaxon’s younger brother Emerson,” says Mike.

When asked what advice Mike would offer to parents of children newly diagnosed with NF1, Mike offer this: “Fight for your child. You are the only one who can get things done, believing what you know. You know your child better than anyone. Do not take no for an answer.”

Mike explains that his family has fought very hard to fight for his son so that he can have the best medical care and quality of life possible.

“The BCNF has helped us by providing information which is available online for us and other families with the same disorder.” Mike shares that he and his family frequently use the BCNF website to keep up-to-date on information and research regarding NF.

Mike shares that although it breaks his heart to witness what people with NF deal with, he will help in any way he can. “I will do whatever I can to make the pain, discomfort, and hurt stop for my family and others living with NF.”

UPDATE BY JAXON’S DAD, MIKE GAUTHIER
In October we were given a chance to apply for Jaxon’s Make A Wish Foundation as he was undergoing chemo and was under extreme observation for the NF tumours that run up from his back and leg and the one in his head. Jaxon was on heavy medication and it was great to have something to look forward to.

At this time we contacted the Make A Wish Foundation. Our experience here was incredible! From our first meetings they made Jaxon feel extra special bringing him presents and then making his wish to go to Disney World come true. They gave us enough memories to last a lifetime!