By Barb Brouwer
Life sometimes hands out hard knocks.
Nobody knows this better than Kayla Butts and her family.
Son Jaxon was born with trisomy 8P with a partial Q, a chromosomal abnormality that can affect many parts of the body. There was a 0.07 chance that he would be born. As far a the family knows, he is the only one in the world with this condition.
Four-year-old Jaxon is unable to move on his own and receives nourishment through a picc line inserted into his main artery.
Kayla and grandmother, Brandi, have remained with Jaxon in Children’s Hospital in Vancouver, where he is receiving care.
This is not their first visit. The family has been in the hospital for about 82 days this time. Not only is the gravity of Jaxon’s health gruelling, the cost to be with him in Vancouver is enormous – more than $7,000 for this trip alone.
Kyla says the family is hoping to bring Jaxon home in a couple of months.
But there are roadblocks that have to be cleared before that can happen and the family that has stretched itself emotionally and financially cannot do that on their own.
Kayla is a single mother who lives in Salmon Arm with her parents Brandi and Rod. The couple has spent thousands of dollars on renovations and medical equipment in order to provide Jaxon the care he needs when he is at home.
But their home is in dire need of a new roof. The existing cedar shake roof is losing some of its shingles, which are sitting on strapping rather than plywood.
While some money will be forthcoming, the couple must come up with a $12,000 downpayment first.
Brandi is hoping someone will also step forward to build a ramp to accommodate Jaxon’s wheelchair.
The third need is help in moving a specialized hospital bed from Kelowna to Salmon Arm, something Brandi says will require a large truck and six people. As well, the only way to get the bed into their home will be by removing a window.
“Every time we set money aside for a roof, a more critical need arises for Jaxon’s care,” she says, noting the new roof is needed in order to prevent the growth of dangerous damp and mould. “If we’re not rearranging walls, we’re buying new equipment and if we need to choose Jaxon over a new roof it’s always going to be Jaxon.”
Brandi says it is hard to ask for help and is proud of her daughter, who has done so much for others in community. When Jaxon was first in NICU, the natal intensive care unit, Kayla made custom onesies for other infants, with sayings such as “I am a Warrior,” and “I am a Tubie,” meaning they were tube fed.
When Covid hit, she started Shuswap Fairies and raised $1,000 for Equisdom, a horse therapy organization in Enderby. She also made and donated face masks to the Shuswap Family Resource Centre.
“Kayla really understands we may not be able to give back a lot, but you do where and when you can,” says Brandi. “That’s what we have always done as a family and I am really proud of her.”
Mother and Grandmother continue to give back by donating blood and invite others to do the same.
A trust fund has been set up at Downtown SASCU under the name Team Jaxon for those who would like to provide financial help. Those who can help with the hospital bed or ramp may send an email to firstname.lastname@example.org.
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