Jamie and Carson’s Hope

Monday, 18 June 2007
Source: The Expositor

Changes in Jamie Huelin are subtle since she received stem-cell treatment to battle the Batten Disease that’s robbing her of life, but the small improvements give her parents hope.

The Brantford five-year-old and her mother, Lori Keeping, returned in late February from China, where Jamie had surgery at a Beijing hospital. The four-hour procedure involved injecting 10 million stem cells into the youngster’s brain through a tiny hole in her skull. Doctors, feeling the disease was taking a greater toll on the right side of her body, injected the cells on the left side of the brain. Ten days later, the family was back at its Osborn Avenue home. Doctors told them it could take days, weeks, or even years, to see any benefits from the stem cells.

Then, in April, Jamie’s brother, Carson, who also suffers from Batten Disease, was offered the chance to be part of a research project at a U.S. hospital. The family cannot reveal many details about Carson’s treatment, including the location of the hospital, partly because of political and ethical controversy surrounding stem-cell treatment in the United States.

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The Canadian Press

By Michelle Ruby

Ontario girl with rare disorder seeks treatment in China

BRANTFORD, Ont. — Lori Keeping and daughter Jamie will travel next month to China where the five-year-old will have a costly and controversial stem-cell treatment that her family hopes will save her life.

Jamie has Batten disease — a rare and degenerative illness that renders its young victims blind, speechless and paralyzed before it kills them.

The Brantford, Ont., girl was about three when she was diagnosed. She can’t walk or talk and is fed from a tube. The family suspects she is blind.
She, her mother and Keeping’s mother will leave for Beijing on Feb. 12.

The trip to China and the stem-cell treatment, expected to cost up to $50,000, will be covered through public donations. Fundraising events and contributions to a trust account set up for Jamie, and her brother, Carson, who also suffers from Batten, amount to just over $100,000.

“We feel hopeful,” Keeping said in a recent interview. “It (the treatment) gives us something to look forward to.”

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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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Siblings fight rare disease
Expensive, overseas stem cell treatment the only hope

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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Mom can’t afford treatment to save her kids.

The only hope Lori Keeping has for her 2 kids is stem-cell therapy.

By THANE BURNETT

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

BRANTFORD — Whatever is troubling you today, it’s likely ludicrous and insignificant.

And the last blow-up you had with your child — the clothes they were wearing, the volume of their music or even dropping out of college to work in a deli — wasn’t important.

Not in the world of Lori Keeping, who may never again hear the word “mom” spoken by her two youngest children.

Pity the parents who bravely cope with a single child who suffers a terminal disease. But spend a moment and try to fathom the crushing weight looming over 28-year-old Lori, 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 may have a short time to live.

And their only glimmer of hope is controversial: A series of stem cell procedures available — for a price the two factory workers can’t afford — on the other side of the world.

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