Jamie and Carson’s Hope

A week ago their burden was too much to bear. Now, thanks to strangers, Jamie and Carson Huelin have hope.

By THANE BURNETT

“Hope” arrived, tucked neatly in an envelope yesterday.

At least that’s what the memo line at the bottom of a signed cheque from a reader noted, when it was slipped into my newsroom mail slot. It was for $100, and was made out to a Brantford family, who are fighting to save their two young children who, so far, have just a short time to live.

Lori Keeping holds her daughter Jamie Huelin, 5, as her son Carson Huelin, 2, looks on in their Brantford home. (Toronto Sun/David Lucas

A week ago in this space, I wrote about the plight of 28-year-old Lori Keeping and her partner Sheldon Huelin, 33, who have learned that both their 5-year-old daughter, Jamie, and their 2-year-old son, Carson, both suffer from Batten Disease. It’s an inherited disorder of the nervous system that most often shows itself when children are very young — a slow and heartbreaking breakdown of the brain. It is, so far, always terminal.

The news that both the children have tested positive for the disease — a rare coming together of incompatible elements in the mom’s and dad’s DNA — is only the latest medical curse on the parents. Their first baby together, a boy named Preston, died on New Years day in 2000 after living only a month with a bad heart.

And both Jamie and Carson seemed physically fine when they were born — only to begin a slide back as they’ve gotten older.

The family dreams of taking the children to China, for stem cell surgery they cannot get here. It is uncertain what extra time the controversial procedures might offer the children. The parents, though, believe it’s their only chance.

Especially when all Lori longs for is just one of the children to be able to say the word, “Mom.”

But time is ticking, especially for Jamie, who may well be blind now, though she has lost her words, and can no longer — in the fog of her disease — communicate with those around her. Batten children rarely see 12 years old.

Thoughts of China once seemed impossible to the parents, who both work factory jobs.

Now the overwhelming response to their cause, following the Sun article, has made the parents believe they can — with further fundraising to collect more than $100,000 — get the procedures done next spring.

“And it hasn’t been just money — the support has come from the heart,” Lori told me yesterday, just after she got off a 12-hour nightshift at an area plant, which is organizing its own Christmas fundraiser. “A woman offering to babysit. People call with advice. A woman who lost a daughter to Batten disease (four years ago at age 12) contacted us.

“It’s touched us so much.

“I really think we can do this now,” she said.

Collection jars are apparently springing up in Brantford restaurants. A charity ride to Casino Rama is being planned for January.

Talks are underway with a major Canadian cellular network, which is waiting for the family to align themselves with a registered charity.

Among those who have donated so far is an Ontario lawyer, who deposited $2,500 in the children’s mercy fund. The impressive dollars join many other smaller contributions, including the $100 cheque that arrived in my mail slot.

“I complain about a Leafs loss or having a hard day at work — never could I imagine two kids who are (terminally ill),” the Bolton gentleman, who mailed in the cheque to me, pointed out in a small note, which included his name, but no return address for a proper thank you.

He — and an amazing number of other people, including the lawyer — just want to reach out to this family, without expecting anything back.

Among the many messages left on my answering machine over the past week, was one from a retired General Motors worker, who read the column and has begun calls to his union heads to help the family.

There seems little reason why such a man would turn his attention to a young family in crisis, but he wants to help.

“I looked at the faces of those children, and realized people have to help — I couldn’t sleep without trying,” said the retired auto worker, who didn’t think his trying to drum up support warranted his name being used here.

I opened last week’s column on the family, by pointing out whatever is troubling you today, it’s likely ludicrous and insignificant. That everything you think is a hardship in your life, compared to the plight of this young couple, is probably too small to even consider important.

Sheldon and Lori thought their burden almost too heavy to carry. But over the past seven days they have found a world of strangers are ready to help give them a hand — to help carry their ailing kids a little further. And, on the ledger, it’s all just marked down as “hope.”

(The family and supporters have set up a website — jamieandcarson.com — as well as a toll-free telephone line — 1-866-553-0770 . Donations may be made to the bank of Nova Scotia, Transit No. 61952-002, Account No. 0106089 — Huelin in trust Jamie and Carson.)