By Cecilia Nasmith/Today’s Northumberland
Though there’s a long way to go on Mason’s journey, Kathy Jackson is grateful for how the community has come through since she launched her GoFundMe page last month.
Jackson is just one of the family members and friends who have done what they can for her nephew Jared Galambos, as he and his wife Alicia raise a special little guy with a very big health challenge. Four-year-old Mason was born with an extremely rare – and incurable – genetic disorder known as MCT8 Deficiency or Allan-Herndon-Dudley Syndrome. The condition means developmental delays and subsequent health complications and a loss of muscle tone so severe they cannot even control the muscles that support the head.
As Mason has grown, he ha begun experiencing debilitating muscle spasms and epileptic seizures. He has been fitted with a feeding tube because he can only swallow with great difficulty.
Around-the-clock care is required, which Jared and Alicia do with love. But covering the expenses of special equipment Mason will need and then outgrow and then require in a larger size is something they cannot manage quite so easily – the wheelchairs, bath chairs, lifts, not to mention a vehicle that can accommodate his wheelchair and equipment as he is taken for on-going surgeries and treatments.
Then there are the unforeseen needs – like the change in formula he recently had to have because he could not stomach the formula he was on. This new formula costs $200 for a case that will last him 24 days.
As a family member, Jackson knows the family’s situation and put up the GoFundMe page to help. She is happy to see donations (ranging from $10 to $1,000) are approaching the half-way point of her $100,000 goal.
Not everyone realizes how much of the financial burden falls to the young couple, she has discovered. People always ask why they don’t get help from the government or some charity, and wonder why Jared doesn’t put in claims with his workplace insurance.
Until this kind of thing happens, she said, you never realize that there is no such thing as 100% coverage. In some cases they can get up to 75% coverage, but even 25% of the cost of something like a $10,000 wheelchair can be devastating for a young family. And in cases where Jared can submit a claim to his workplace insurance, whatever he recovers is counted against a lifetime cap of $50,000.
The posting of the GoFundMe page has brought the family’s situation to a wider audience, and Jackson is so grateful for donations from service clubs like the Cobourg Odd Fellows and Rebekahs and the Rotary Club of Brighton, from trade groups like carpenters and railroaders, and Alicia’s former employer and clients. Jackson’s friend Angie Reynolds has been selling items on Facebook to come up with her own donation of $1,000.
The McKesson company has donated a half-dozen cases of formula for Mason, and another respondent has offered a donation of equipment through Five Counties Children’s Centre, which the family really appreciate.
They were especially delighted with the donation of a brand-new hospital bed from someone in Gananoque who learned of their story.
“That was the next big piece of equipment on their list,” Jackson said.
Another long-term cost will be adapting their two-storey home for a little boy who will soon be impossible to carry upstairs. A routine stairlift cannot be used by someone who cannot support his head, and Jackson has learned that what will be needed is a huge lift that can take Mason up, wheelchair and all.
Some builders have been approached about possibly donating some work on the house, and they have had promising talks with John Korotki of JCK Construction.
For more than a decade, Korotki has worked with March of Dimes to donate $5,000 worth of adaptive work to a Brighton family each year. He has made Mason his 2021 March of Dimes child, and is working with Jared and Alicia to determine what adaptations might be best to do for the boy.
The point of it all, Jackson said, is to help with a major stressor for the family so they can focus that much more on caring for their son.
On Family Day last month, Jackson visited her GoFundMe site to publish her own tribute to Mason’s mother, “a thoughtful, creative and considerate woman, with a caring heart.”
She cherishes the home-made greetings that come her way each holiday that Alicia has crafted with her son, attaching the hand brace that allows him to turn out his version of a bird house or a flower.
She has also spoken of how Mason has a smile that can light up a room and a laugh that can make your day.
And she thanks every donor who has responded to her appeal for their kindness and generosity, hoping that the GoFundMe campaign can help remove a little bit of the worry that his mom and dad face in looking ahead to his future needs.
You can read Mason’s story at https://gofund.me/6ef95416.
Author: Pete Fisher
Has been a photojournalist for over 30-years and have been honoured to win numerous awards for photography and writing over the years. Best selling author for the book Highway of Heroes - True Patriot Love
