Nfld. & Labrador

Rare disease affects Deer Lake twins, family tries to stay strong

Freya and Autumn Chynn have Krabbe's Disease, which robs them of control over their muscles and nerves. Their family is doing what it can to enjoy every moment of what could be a short life.

Girls 'too far progressed' to take advantage of new treatment in U.S.

Freya and Autumn Chynn were born on Valentine's Day and started having problems when they were about four months old. (Facebook/Autumn and Freya's Journey)

A Deer Lake family has spent weeks at the Janeway Hospital, where their infant daughters are being treated for a rare and usually fatal degenerative disorder.

Freya and Autumn Chynn, identical twins born on Valentine's Day in 2016, have Krabbe's Disease, an inherited genetic disorder.

"Everything was going smoothly up until four months of age. They started having feeding problems and losing a bit of weight," said their father, Justin Chynn. 

"At first we thought it might have been an allergy or a stomach issue.  It was misdiagnosed as cerebral palsy at first."

The eventual diagnosis of Krabbe's Disease was not good news.

"Basically the girls don't produce a certain enzyme in their body, which doesn't break down another compound, and that compound becomes toxic and eats away at the myelin sheath of their nerves and that slowly takes away their muscle control, eyesight, hearing, everything," Chynn explained.

Justin Chynn says the girls have trouble clearing mucus, so he uses a thumper to help break it up. (Facebook)

Chynn and his partner Ashley Young have been told their daughters could live between two to five years. Over the past few months, they have regressed to the point where they don't smile or roll over, and Autumn is not able to raise her head.

Trying to stay strong

For the 29-year-old father, it is a bitter reality.

"That's one of the things I find the hardest. That all the plans and dreams you had for your daughters, that you know, aren't going to happen now."

He and his partner are doing what they can to make their girls comfortable.

"I'm just trying to let it make me stronger, more than anything … We still take in all the family moments we can, walks through the woods, movie time and all that, lots of snuggles."

We still take in all the family moments we can, walks through the woods, movie time and all that, lots of snuggles.   - Justin Chynn

The family looked into treatments available in the United States, flying to Pittsburg to consult with a doctor there, but the girls were too far progressed, Chynn said Friday.

For now, they are at the Janeway Hospital in St. John's waiting for surgery.

"When we came to the Janeway, we packed for three days and we've been here six weeks. I've been off work ever since," said Chynn.

The twins came to St. John's for a consultation at the beginning of November and have been at the Janeway Hospital ever since. (Facebook)

Freya and Autumn will need a lot of expensive medical equipment, including $4,000 strollers. Family and friends have organized weekend fundraisers to help cover the cost.

"Money doesn't cure anything but it does help us," said Chynn.

The fundraisers start with a helicopter ball drop at Bowater Field in Deer Lake at 2 p.m. Saturday.

On Sunday there's The Chynn Twins Fam Jam — a benefit concert featuring Anchors Aweigh, The Catch, Dave Mchugh, Sherman Downey, and others, at Marble Mountain Resort from 2 p.m. to 10 p.m. 

Justin Chynn and Ashley Young are also maintaining a Facebook page called Autumn and Freya's Journey.

With notes from Gavin Simms