A Need-to Read

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


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.

The children suffer from Batten disease, an inherited disorder of the nervous system, which most often shows itself when children are very young. A hidden genetic poison in both Lori and Sheldon -- two Newfoundlanders who met and fell in love eight years ago -- combined to be fatal for their children. It was a one in a thousand clash of DNA.

They both thought they had been through the worst disaster, when their first baby together, a boy named Preston, died on New Years day in 2000, after living only a month with a medically broken heart.

But they were wrong in thinking life would go on.

Often -- as in the case of Jamie and Carson -- Batten babies are born without signs of trouble. They begin to grow on the outside, as inside, tortured brains fight unwinnable battles.
The disease can start with subtle signs, like personality and behaviou ral changes. The children become clumsy and stumble. It only gets worse. There is a mental breakdown, as seizures grow worse, sight dims and motor skills give way to the involuntary jerks of uncontrolled muscles.
After a great deal of tests and false hope, the parents were handed Jamie's diagnoses a year and a half ago.

As I sit with Lori at the kitchen table in a Brantford subdivision, Jamie -- green eyes which have been dulled by anti-seizure medication -- is twisted and contorted in a chair nearby. She rests against a Dora the Explorer blanket. But she likely doesn't know this. She is mentally adrift and may be blind. Unable to communicate any more, her family has no way of being sure of what she sees or thinks or feels.

After Jamie was diagnosed, the family waited until her younger brother was old enough to test. About a month ago, they were given an answer Lori was expecting. It was Sheldon who picked up the results from a hospital. He came home, let the family eat dinner in peace, then sat with Lori.

"I think I said, 'I just knew it,'" she recalls, as Carson darts around the room carrying a plastic toy train.

He bounces on his toes, rather than his full feet. He is a manic bundle of movement -- an early sign of the disease most people would take as boyhood energy. He rarely looks at grownups in the eyes. As he rushes about, he knocks against chairs and grazes the sides of walls.

Words don't tumble from his mouth. It's been some time since he really spoke. He can communicate with his parents with rudimentary hand signs -- liking the warm touch of his mom, to form his small hands into the required shapes.

Lori's world is a hectic and stressful place. She nervously cringes at the constant clack of Carson's battery operated train, abandoned under a bed in a far-off bedroom.
She can't remember what she had for supper last night.

It is rare she spends time with friends -- her 12-hour shift at a factory job her only chance for welcomed adult distraction.

As we talk, a friend drops off a little girl, Carson's age. The two mothers were pregnant at the same time. Lori can't help but look at other children and wonder why her own son and daughter couldn't be handed the same unwritten future.

Jamie's time, worries the young mom, is growing short. Carson's voyage to her altered state is only beginning.

Neither is now likely to see an 11th birthday.

Their only hope, Lori and Sheldon believe, is stem cell procedures in China -- operations which the family can't get here. They are controversial -- both morally and medically -- and they cost a great deal.

But parents -- as well as adult Canadians looking to China and India for stem cell infusions to help with everything from spinal cord injuries to Parkinsons -- are willing to pay. A Hamilton family, whose child also suffers from Batten disease, apparently left for China just yesterday.
With the help of friends, Lori and Sheldon are trying to find a way to come up with as much as $100,000 to get the children overseas. They have set up a website (jamieandcarsonshope.com) which is under construction, as well as a toll-free telephone line (1-866-553-0770).
It is unclear whether it will all be in time -- especially for Jamie -- or what the introduction of millions of stem cells into their spinal cords and brains could mean in fighting what's slowly killing them both.

But it is all Lori and Sheldon can think to do and dare to believe in.
And it's not a miracle of total salvation Lori dreams of for their two youngest. It is what most parents take for granted.

"If I could just hear the word 'mom' from them," says Lori.

"I haven't heard it in months. And it's all I want to hear."

*I think this story just about broke my heart. After reading it on canoe.ca, I had to post it in my blog for the sheer fact that I hope people read it and give a shit. It also made a point to me today--that no matter how bad things can be for a person, they can always get worse. My thoughts are, and will remain, with this family. Here's hoping that a shimmer of luck shines down on them soon.

~T