Jamie and Carson’s Hope

A crusade to save lives of two children

By Sharon Boase
The Hamilton Spectator

BRANTFORD (Nov 6, 2006)

Sheldon Huelin spent all day yesterday campaigning — but his quest has got nothing to do with the Nov. 13 municipal election. The stakes are much higher for Huelin and his wife, Lori Ann Keeping, than winning political office or wielding power over people or even a whole city. This campaign is about saving the lives of their two youngsters who are doomed to die before they reach their teens without some sort of miraculous medical intervention.

Five-year-old Jamie and two-and-a-half-year-old Carson have Batten disease, a fatal, inherited nervous system disorder that causes the brain to shrink and shut down over time, eventually robbing its young victims of their speech, sight and motor abilities.

There is no known cure or prevention for it.

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NATALIE MUSSEAU
The Gulf News

Lori Keeping is one of countless busy mothers trying to fit everything in her day.

She has a full-time job outside the home, child-care responsibilities, cooking and cleaning chores and numerous other typical tasks.

But her family is anything but typical.

Added to the normal duties are countless hours of Internet research, conversations with other parents, doctors’ appointments, media interviews and fundraising — all centered on a disease that may rob her of two children.

Both daughter Jamie, 5, and son Carson, 2, have been diagnosed with Batten disease.

Usually accepted as fatal, Batten disease is a rare inherited disorder that affects children with the progressive loss of motor and cognitive skills. Life expectancy for some cases is less than eight years of age.

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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.

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