(GREAT FALLS) Zach and Alecia Gloege take each day step by step. Their 4-month-old son Brayden was diagnosed with a rare disease – Infantile Gangliosidosis, or GM-1. The odds of someone being diagnosed with the disease is 1 in 100,000 to 200,000.
“Eventually it will cause hearing loss, vision loss, fine motor skills, he’ll lose muscle tone. So it’s just a matter of how fast it’ll affect him,” said Alecia.
The diagnosis came as a surprise, after being admitted to Benefis Health System for rhinovirus at first, but the tests showed he had an enlarged heart.
He was airlifted to Seattle and that’s when they got the news.
“Absolutely devastating,” said Alecia. “Because you look at him and you would think that there’s absolutely nothing wrong with him…It’s kind of hard for us to process because in our eyes, he still seems fairly healthy.”
Both Zach and Alecia are carriers of the disease, but they said it’s never affected their families until now. They plan to take Brayden’s older brother, 3-year-old Camden, to get tested for the disease.
“It’s just kind of crazy to us that you can have one child be completely normal and then you decide to have another child. There’s always a risk that somethings going to be wrong, but I mean, it just kind of hit you like a ton of bricks.”
While the life expectancy is only three years, that doesn’t change how they’ll spend the time left with him.
“We’ve got a good family plan here, a good system that we got to go day by day and hope for the best every day. Spending as much time as we can with him and his brother together. Keep them happy, it’s a quality of life thing.
As for the future, they’re optimistic.
“You never want to lose a child so I just, hopefully, we can try some clinic trials and try some different medications that they’ve been trying and hopefully it’ll have a different effect on him.”
And they’ll continue to pay it forward.
“We will always be giving back to them because so many kids need it,” said Alecia. “If they can use anything they found through his blood work, his DNA, his lab tests to help out a family in 10 years,” said Zach.
Alecia quit her job to stay home to take care of Brayden since he is more prone to having seizures.
“And I’m just glad that I have that ability that I can enjoy the time that we have with him.”
The family has set up a GoFundMe account to help with medical costs; click here if you would like to donate.
They will be returning to Seattle for a checkup in June.
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