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Deer Lake family focused on making the moments special as twin girls fight deadly disease

The Chynn twins — Freya (left) and Autumn.
The Chynn twins — Freya (left) and Autumn.

“Freya, she is the spitey one,” Justin Chynn said with a little laugh when asked to describe his twin daughters. “She likes to get angry sometimes and she shows it.

“And she’s a big sook for her dad. She’s daddy’s girl.”

Autumn, on the other hand, is more relaxed.

“She’s more laid back,” Chynn said. “And she’s a big sook for her mom.”

The 10-month-old twins sound like a lot of other babies, but there is something that separates them from so-called normal infants —  a rare, often fatal degenerative disorder known as Krabbe A disease.

Sometimes as the family deals with the illness, Chynn said, he and his girlfriend, Ashley Young, forget about the normal things a baby will go through. Recently, for example, when Autumn was in a lot of pain, Chynn said, they thought it was related to the disease, only to realize she was teething.

The girls were born on Valentine’s Day, and the next few months were as normal as having two new babies for two new parents can be.

When they were about four months old, Autumn and Freya, who up to then had been exclusively breastfed, started having feeding issues. Then they started having some weight issues, Chynn said from his home in Deer Lake.

So the new parents took them to the hospital and returned home with the advice to feed them more. After trying that with no success, they went back to the hospital, where a pediatrician initially thought the babies might have cerebral palsy.

When their own pediatrician returned to work in August, Chynn and Young took the girls to see her and were immediately referred to the Janeway in St. John’s.

As doctors there tried to figure out what was wrong, the thoughts went from it being an allergy, to a stomach issue and again cerebral palsy, as it is often misdiagnosed. After many tests, poking and prodding came the diagnosis of Krabbe A disease.

It turns out both Chynn and Young are unaffected carriers. That gives any child they have a one-in-four chance of having Krabbe A. Because Autumn and Freya are identical, they both have the disease.

The prognosis for the twins is not good. Children diagnosed with Krabbe A disease have about a two-year lifespan. But depending on how well the symptoms can be managed, there are children who were diagnosed early and lived to be seven or eight.

“It really comes down to the parents a lot of times and how well they manage the disease and the symptoms,” said Chynn.

He and Young — who he said amazes him every day — want to push it as far as they can.

That has meant a lot of research to learn as much as they can about the disease, a trip to Pittsburgh to meet with a specialist in Krabbe and connecting with other affected families through Facebook.

It’s also meant opening themselves up to a great outpouring of support from the community.

The support has been incredible, Chynn said of the unexpected help they have received through fundraisers.

It will be an expensive journey for them, as the babies will require some specialized equipment such as a $4,000 stroller and a $1,000 bath chair, some of which is covered and some not.

There’s also travel as they visit the Janeway. Just recently the twins underwent surgery there to have gastrostomy feeding tubes (G-tubes) inserted in their stomachs and a fundoplication that will help with reflux.

The disease will slowly take away their muscle control and will impact their senses.

Chynn said their focus is on dealing with it the best way they can, taking it a day at a time and doing everything parents normally do with their children — like celebrating Christmas, as hard as it may be.

“We’re not sure if this could be their only Christmas, so we’re trying to make that extra special.”

The plan is to centre the holiday around their home, and their families will join them there. They’ll do the same for all the big moments in Autumn and Freya’s lives.

“We’re just trying to make sure to make them as special as possible,” he said. “I’m just trying to take the good out of it, really, and just to let it make me stronger.

“What I find the hardest is just all the plans and the dreams you have for your kids and you know they might not, well, they will not, happen.”

“And she’s a big sook for her dad. She’s daddy’s girl.”

Autumn, on the other hand, is more relaxed.

“She’s more laid back,” Chynn said. “And she’s a big sook for her mom.”

The 10-month-old twins sound like a lot of other babies, but there is something that separates them from so-called normal infants —  a rare, often fatal degenerative disorder known as Krabbe A disease.

Sometimes as the family deals with the illness, Chynn said, he and his girlfriend, Ashley Young, forget about the normal things a baby will go through. Recently, for example, when Autumn was in a lot of pain, Chynn said, they thought it was related to the disease, only to realize she was teething.

The girls were born on Valentine’s Day, and the next few months were as normal as having two new babies for two new parents can be.

When they were about four months old, Autumn and Freya, who up to then had been exclusively breastfed, started having feeding issues. Then they started having some weight issues, Chynn said from his home in Deer Lake.

So the new parents took them to the hospital and returned home with the advice to feed them more. After trying that with no success, they went back to the hospital, where a pediatrician initially thought the babies might have cerebral palsy.

When their own pediatrician returned to work in August, Chynn and Young took the girls to see her and were immediately referred to the Janeway in St. John’s.

As doctors there tried to figure out what was wrong, the thoughts went from it being an allergy, to a stomach issue and again cerebral palsy, as it is often misdiagnosed. After many tests, poking and prodding came the diagnosis of Krabbe A disease.

It turns out both Chynn and Young are unaffected carriers. That gives any child they have a one-in-four chance of having Krabbe A. Because Autumn and Freya are identical, they both have the disease.

The prognosis for the twins is not good. Children diagnosed with Krabbe A disease have about a two-year lifespan. But depending on how well the symptoms can be managed, there are children who were diagnosed early and lived to be seven or eight.

“It really comes down to the parents a lot of times and how well they manage the disease and the symptoms,” said Chynn.

He and Young — who he said amazes him every day — want to push it as far as they can.

That has meant a lot of research to learn as much as they can about the disease, a trip to Pittsburgh to meet with a specialist in Krabbe and connecting with other affected families through Facebook.

It’s also meant opening themselves up to a great outpouring of support from the community.

The support has been incredible, Chynn said of the unexpected help they have received through fundraisers.

It will be an expensive journey for them, as the babies will require some specialized equipment such as a $4,000 stroller and a $1,000 bath chair, some of which is covered and some not.

There’s also travel as they visit the Janeway. Just recently the twins underwent surgery there to have gastrostomy feeding tubes (G-tubes) inserted in their stomachs and a fundoplication that will help with reflux.

The disease will slowly take away their muscle control and will impact their senses.

Chynn said their focus is on dealing with it the best way they can, taking it a day at a time and doing everything parents normally do with their children — like celebrating Christmas, as hard as it may be.

“We’re not sure if this could be their only Christmas, so we’re trying to make that extra special.”

The plan is to centre the holiday around their home, and their families will join them there. They’ll do the same for all the big moments in Autumn and Freya’s lives.

“We’re just trying to make sure to make them as special as possible,” he said. “I’m just trying to take the good out of it, really, and just to let it make me stronger.

“What I find the hardest is just all the plans and the dreams you have for your kids and you know they might not, well, they will not, happen.”

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