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.

But Keeping can say that the three-year-old received stem cells that were injected into his brain through six nickel-sized holes in his skull. The family will travel each month to the States for the next year so that Carson’s progress can be monitored.

At home this week, Jamie reclined in a living room chair while being fed from a tube.
Once a feisty toddler, she is now unable to speak, walk or eat and may be blind.

But, since the stem-cell treatment, the right side of Jamie’s body seems more relaxed. She has taken small amounts of applesauce and yogurt and is moving her lips more frequently. On good days, Keeping says, her daughter giggles.

The progress is minuscule but, for now, Keeping says it’s enough.

“I don’t expect her to get up and run around tomorrow. As long as she’s comfortable.”

Batten Disease, a extremely rare genetic disorder, hasn’t yet taken Carson’s ability to walk or eat. But Keeping says he has the developmental level of about a 12-month-old and they are concerned that his eyesight may be failing.

“He seems more alert since his treatment. He looks more quickly when we call his name.”

“It’s all about watching and waiting,” said Keeping’s husband, Sheldon Huelin. “It’s really worrisome. Every time there’s a change we wonder, is it the disease or the new stem cells? Once the cells are in there, they’re in there to stay, good or bad.”

Right now, there is nothing else available to fight Batten’s relentless assault – which renders its young victims blind, speechless and paralyzed before it kills them. It is caused by a defective gene – which must be present in both parents – that fails to create an enzyme needed in the brain to help dispose of cellular waste. The waste piles up and kills healthy cells. Most victims die before they reach their teens.
Pioneering stem-cell treatment is having some limited success on Batten patients. The hope is that the brain-infused cells will make enough of the enzyme that’s missing in Batten Disease, so that cells throughout the brain will no longer become engorged with unrecycled waste.

Opponents of embryonic stem-cell research and treatment argue that it is a slippery slope to reproductive cloning.

Medical researchers believe that stem-cell therapy has the potential to radically change the treatment of many human diseases, including cancer, Parkinson’s, spinal cord injuries and muscle damage.

For Jamie and Carson, there’s nothing else.

“What other option did we have?,” said Keeping. “We couldn’t live with ourselves if we didn’t do everything we could.”

“It’s a shot, a chance,” said Huelin. “You just can’t sit around and watch them die.”

The significant cost of Jamie’s treatment – an estimated $50,000 – has been covered by public donations. Tickets for the flight to China for Jamie, Keeping and her mother were given to them by Air Canada. The cost of Carson’s treatment, including flights and hotels, are covered by research money.

Keeping said the family still has enough money for a second treatment in China for Jamie in about a year. That could be followed by a third surgery a year later.

In the meantime, Keeping plans to enrol Jamie in Grade 1 at Ryerson Heights, where a nurse will be assigned to take care of her medical needs.

“I know she won’t learn anything, but we want to see if she’ll be stimulated. We want to try to give her a bit of a normal life.”

Carson attends preschool and Huelin said they continue to contribute to a college fund set up for their son when he was born. “We’re trying to keep our hopes up.”

When the children’s hectic treatment schedule slows down, Keeping and Huelin, both employees at factories in Burlington who continue to work full time, want to organize some kind of fundraiser for the Canadian Batten Foundation, which has provided them information and guidance.

Huelin said support for the family has come from across the country, with strangers holding dances and barbecues to raise money for his children.

“We just want to thank everybody. We couldn’t do it on our own.”

Donations can be sent to: Huelin in Trust (Jamie and Carson), Bank of Nova Scotia, 1791 Lakeshore Rd. W., Mississauga, transit number 61952, account number 0106089. Donations can also be sent to P.O. Box 25084, West Brantford, RPO, Brantford, N3T 6K5, or be made at any branch of the Bank of Nova Scotia.

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.”

Batten disease is caused by a defective gene — which must be present in both parents — that fails to create an enzyme needed in the brain to help dispose of cellular waste. The waste piles up and kills healthy cells. Most victims die before they reach their teens.

The genetic disorder is so rare that, according to Keeping’s research, there have only been 48 diagnosed cases in Canada in the last 100 years.
While the family had originally planned to take both Jamie and Carson to China, Keeping said they are now hopeful Carson can get help closer to home. Carson, who will turn three in April, is on a waiting list for experimental stem-cell treatment in Portland, Ore.

At a children’s hospital in Oregon in November, a six-year-old boy with Batten was given injections of neural stem cells directly into his brain. The surgery was part of a clinical trial with an immediate goal of healing Batten-afflicted children. In the coming decades, however, this work could lead to treatments for neurodegenerative disorders that affect millions, such as Huntington’s, Alzheimer’s and Parkinson’s diseases.

Keeping said Carson’s health remains good — he continues to be active — but she worries that time could be running out. Jamie was three when she first began having seizures that are an early sign of Batten.

“We don’t want to wait too long,” Keeping, 28, said of Carson. “We’d like to keep him walking.”

She said that if Carson isn’t successful getting treatment in Oregon, the family will take him to China.

The procedure in China involves blood stem cells, which have been taken from umbilical cords with the consent of new mothers, being injected in the children’s spines and brains where, it is hoped, they will start to repair the damage done by Batten.

Keeping said she doesn’t know all the details about the surgery — she has been communicating with experts in China mostly through e-mail — but understands a small hole will be drilled into Jamie’s skull through which more than five million stem cells will be inserted in her brain. She will spend several days in intensive care. Keeping expects to be in China for about a month.

Keeping’s husband, Sheldon Huelin, 33, will stay behind in Brantford, southwest of Hamilton, to care for Carson and an older son.

Huelin said the family has been deeply affected by people’s generosity toward their children.

“We’ve had a lot of response from right across the country, especially from Newfoundland, where we’re from.”

It’s all a little overwhelming, he said.

“We live in a society where everybody’s so busy. You don’t think people are thinking about stuff like this.”

Details about the family’s story and upcoming fundraisers are available at www.jamieandcarson.com. Last Updated ( Wednesday, 24 January 2007 )

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.

So Huelin, a millwright, has begun knocking on corporate doors from Burlington to Brantford looking for donors in a bid to raise $150,000 to take his children to China for a radical stem cell procedure.

“We thought, ‘Shoot, that’s pretty expensive,’” Keeping said of the experimental brain surgery.

“And I’m really nervous about it, I won’t deny it. But it’s the only thing we’ve got left to do. There’s nothing else out there for them.”

Jamie can’t speak, see or move much on her own anymore. She has to be fed through a tube and carried wherever she needs to go.

Although still sighted and mobile, Carson has lost the few words he had picked up, including “mom.”

Huelin and Keeping, a machine operator, read about the procedure in The Spectator which has tracked the progress of Travis Carter, an eight-year-old city boy who underwent the stem cell procedure in Beijing last Wednesday.

The couple has been visiting a website documenting the progress of young patients at the Beijing hospital and have spoken by telephone to a British woman whose eight-year-old daughter had the treatment.

“The pictures we’ve seen of her daughter, she looks more alert,” said Keeping.” And before, she couldn’t walk at all but since the procedure, she’s been able to walk with someone helping her.” Keeping was eight months pregnant with Carson when Jamie had a seizure just after her third birthday. At first, doctors thought she was epileptic. But when Jamie began losing words and then stopped making eye contact, the diagnosis became autism. When Jamie stopped walking and then stopped eating and drinking, she was soon diagnosed with Batten disease. Her little brother was diagnosed last September. Keeping said she and Huelin were shocked when they discovered she was pregnant with Jamie. Between working opposite shifts and coping with the grief of losing their first-born, they hadn’t had much time together. Preston Huelin, who was born with a heart defect, died on Jan. 1, 2000, age one month. Meanwhile, Huelin has an eight-year-old daughter from a previous relationship who’s been diagnosed with Lupus, a chronic disorder of the immune system. But Zackery, Keeping’s 12-year-old son from a previous relationship she is raising with Huelin, is healthy. Keeping’s Aunt Suzy and two home care workers help out with Jamie’s and Carson’s care.” I try not to dwell on it,” Keeping said. “I try not to look at my kids like they’re sick. I know they have a problem but I try not to look at them that way. I try not to treat them any different than any mother treats her children.” Donations can be made to Bank of Nova Scotia, transit number 61952-002, account number 0106089. I know they have a problem but I try not to look at them that way. I try not to treat them any different than any mother treats her children.” Donations can be made to Bank of Nova Scotia, transit number 61952-002, account number 0106089. Huelin and Keeping invite you to call them for more information at 1-866-553-0770.

Batten disease is named after the British pediatrician who first described it in 1903. It is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCLs).

A rare disorder that has nevertheless been identified around the world, Batten disease/NCL occurs in an estimated two to four of every 100,000 births in the U.S.

Symptoms are linked to a buildup of fats and proteins in cells of the brain, eye, skin, muscle and other tissues.

Vision loss is often an early sign, as are behaviour changes, slow speech and learning, clumsiness and stumbling. It robs its victims of sight, mental function and motor skills. It also causes worsening seizures.

Children with Batten disease tend not to live beyond eight to 12 years, 20 at the outside.

No treatment is yet known to halt or reverse symptoms although seizures can be reduced with medication.

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.

But that’s not an accepted fact for Burnt Islands native Ms. Keeping or her partner, Sheldon Huelin, who is originally from Isle aux Morts.

The pair, now living in Brantford, Ont., are trying to raise enough money to take their children to China for stem cell treatments that may offer hope. The bill could top $140,000.

Jamie needs constant care, according to Ms. Keeping. She doesn’t talk, cannot walk or even sit up on her own and is losing her sight. Her parents aren’t sure if Jamie is always aware of her surroundings.

Jamie has good days and bad, said her mother, who sometimes finds it painful to watch her daughter. Her mother and father can often tell what she’s feeling by the tone of noises she makes.

“When she laughs, it makes us laugh,” said Ms. Keeping. The family has workers come in every day to help care for Jamie.

For now, Carson is a mostly typical two-and-a-half-year-old. Ms. Keeping said he doesn’t talk, but does all the other things a boy of his age would. More symptoms likely won’t start appearing for another six to 12 months.

The beginning

When Jamie was about two-and-a-half, her parents noticed she was barely talking. Ms. Keeping said that concerned her because other children are hardly ever quiet at that age.

They took Jamie to a doctor who basically dismissed their concerns, saying that she would talk when she was ready. As other symptoms appeared, such as the loss of what speech she had and stumbling when she walked, they sought more medical attention.

“Originally, she was diagnosed with autism,” said Ms. Keeping. She added that she has since learned that early misdiagnosis is common with Batten disease. There are only 47 known cases of the disease in Canada.

Jamie was finally diagnosed with Batten disease after being hospitalized for dehydration after getting sick and refusing to eat or drink. Ms. Keeping said the doctors arranged a meeting where they told she and Mr. Huelin what the diagnosis was, and what it meant.

“We weren’t ready to hear what they were ready to tell us,” said Ms. Keeping. She said they were told to take Jamie home, make her comfortable and wait for the end; there was nothing that could be done for her.

Ms. Keeping was already pregnant with Carson.

It wasn’t the first time the young couple dealt with heartache. Their first child, Preston, was born in November 1999 with an underdeveloped chamber in his heart. Despite weeks of hospital treatment, he died in January 2000.

Doctors said the defect was a “fluke,” according to Ms. Keeping. She said, in some ways, she’s now curious if Preston had Batten disease. It would not have caused his heart problem, but she wonders if he would have developed the symptoms if he had lived.

Stem cell hope

After Jamie’s diagnosis, Ms. Keeping said she initially didn’t want to talk to anyone about it, or want to see other children with the disease. But she and Mr. Huelin soon started looking for information about Batten disease on the Internet. They soon made contact with other parents dealing with the same things.

It was through this research that the couple found out about the possibility of a stem cell treatment.

Stem cells are special cells that have the potential to develop into any kind of specialized cell in the body, such as brain cells, liver cells or nerve cells. They are found in bone marrow, embryos and umbilical chords. Stem cell research and treatments are controversial because some use aborted embryos or create embryos specifically for research purposes.

There is a procedure being done in China, where umbilical chord stem cells are surgically implanted into areas of the brain. The hope is that these cells will turn into the type of cells that produce the specific enzyme missing in Batten disease patients.

Ms. Keeping said stem cell treatments are not controversial to her.

“I can’t see how something so good could be so wrong,” she said, adding that research and treatments use stem cells that would have otherwise been discarded.

Ms. Keeping said they have been in contact with a family in England whose child received the treatment. She said the six-year-old is making progress and can now say some words and sit up on her own — things that were impossible before.

It is unknown how much the treatments will help or if the effects will be permanent. Ms. Keeping said she knows of only three children with Batten disease who have undergone the treatment.

But it’s that hope of progress that has Ms. Keeping and Mr. Huelin working to raise the money needed to take both their children to China to receive the treatment.

The cost

Ms. Keeping said the stem cell treatment in China will cost about $70,000 for each child. That cost includes the procedure and a required one-month stay in China. It could be less expensive to have both children treated at the same time.

It’s a lot of money for the couple. Ms. Keeping works as a machine operator for a vinyl siding company and Mr. Huelin is a millwright at an automotive manufacturer.

They have set up a website (www.jamieandcarson.com) and a toll-free number (1-866-553-0770) to provide information and accept donations. Family members organized a greenback shower in Isle aux Morts on Thursday. Some 140 people attended and about $9,700 was raised.

Ms. Keeping is also waiting for a call from a research project in Portland, Ore. Carson is on a waiting list to be tested to see if he will qualify for stem cell research going on there. Jamie’s case is now too severe to qualify.

Ms. Keeping remains hopeful for both her children, even if that’s sometimes a difficult attitude to maintain.

“You have to stay hopeful, stay positive. Knowing what could be coming for Carson, you have to,” she said.

“We take it day-by-day. I can’t tell you what’s going to happen tomorrow because I don’t know.”

nmusseau@gulfnews.ca

“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.)

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.

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 (jamieandcarson.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.”