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Terminally Ill S.D. Man Looks For An Answer In Stem Cells

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Aired 12/2/09

Stem cell research offers great promise for people with incurable diseases. But promises won't help those who don't have time to wait for those medical breakthroughs. A man, dying of Lou Gehrig's disease, has gone out of the country in search of treatment.

Shane FitzMaurice, terminally ill with ALS, holds his youngest son on his lap.
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Above: Shane FitzMaurice, terminally ill with ALS, holds his youngest son on his lap.

— Stem cell research offers great promise for people with incurable diseases. But promises won't help those who don't have time to wait for those medical breakthroughs. A man, dying of Lou Gehrig's disease, has gone out of the country in search of treatment.

Shane FitzMaurice is a handsome 53-year-old whose eyes sparkle when he smiles. He's a successful small business owner. He also has ALS, Lou Gehrig's disease, which forces him to wear a breathing tube attached to his nose and has made him physically helpless.

"In 2004 I was still playing tennis," he said. "Now I can't walk or use my hands or arms."

"Do they expect you will die soon?" I asked.

"Nobody ever gives you an exit date. But my own prognosis is I've got a year or two left," said FitzMaurice.

ALS is a disease that causes the body's motor neurons to degenerate and die. People with the disease typically die within five years of diagnosis. There is no cure and no proven way to slow the progression of ALS. Shane FitzMaurice shares his pain with a wife and four children.

"One of the things that Frankie, who is the 3-year-old, said was, 'Papa, you're getting old, right?' I said 'I guess so, Frankie. Why do you think I'm getting old.' He said, 'Because you're in a wheelchair and you can't walk.' So he was processing the information in his own way," said FitzMaurice.

FitzMaurice said the desire to do something lead him and his wife to a clinic in Monterrey, Mexico, which performs stem cell treatments that aren't permitted in the U.S. Stem cells are immature cells that can, theoretically, be turned into any tissue in the body. FitzMaurice said the clinic got stem cells from his blood that were then injected into his brain. This was done in hopes the stem cells would turn into motor neurons and stop or slow his disease. Fitzmaurice said he paid the clinic $18,000 for the treatment.

"Because there's not a lot of hope out there," he said. "There's not a lot of procedures anywhere in the world that help. And of all our searching, of all our homework, this one seemed the most likely."

Jeanne Loring is director of the Center for Regenerative Medicine at Scripps Research Institute in San Diego. She says she no longer answers her office phone.

"I found that about 50 percent of the calls I got were from people who were absolutely desperate about getting stem cell therapies," said Loring. "And one thing I didn't want to do is pick up the phone, and the only thing I could say is that I can explain all this to you, but I can't send you to any clinics. Because we're not ready yet."

Loring isn't familiar with the clinic FitzMaurice visited. But she's skeptical of it. She says stem cells from blood and bone marrow can't be transformed the way that embryonic stem cells can be, unless they are reprogrammed. And even if motor neurons can be made from stem cells in a lab, medical science still doesn't know how to make them do what they need to do in the human body. She says medical tourism, as it applies to stem cell therapies, has given rise to many dishonest operations.

"There was a clinic in Beijing that promised to cure Alzheimer's disease, autism, ALS, blindness -- I'm just going in alphabetical order here," said Loring.

She said the stem cell treatments overseas may not be dangerous. But she's offended by clinics that financially prey on desperate people with incurable diseases. Shane FitzMaurice said his trip to Monterrey made him feel better, at least temporarily, though he says he knows about the placebo effect. Was it worth the money he paid?

"Well, I've done something positive for myself. So yes," said FitzMaurice.

Hope keeps people alive, and it's something that's in short supply for people with terminal illnesses. Jeanne Loring at Scripps says research funded by the State of California will lead to clinical trials of stem cell treatments for Lou Gehrig's disease within four years. But that will probability be too late for Shane FitzMaurice.

Comments

Avatar for user 'StemCellPioneers'

StemCellPioneers | December 2, 2009 at 4:36 p.m. ― 5 years ago

I am surprised that Ms. Loring has not heard of the clinic in Monterrey. As co-founder of www.stemcellpioneers.com most of the ALS patients that are members are well aware of this clinic. I believe that Shane is a great pioneer and what he has done is take the bull by the horns and do what he had to do to try to save his life. The U.S. is sadly very much behind in any kind of treatment it can offer many of us with terminal and chronic diseases. There are very few clinicals either. I am grateful for offshore clinics that maintain high standards. A grassroots non profit organization www.safestemcells.org has published an offshore guide to treatment that will help patients weed out the clinics that do not adhere to safe stem cell treatments. Ms. Loring should pick up her phone and call the clinic in Monterrey. She might learn something. I hope this treatment will give Shane the extra time he needs until an absolute cure can be found.

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Avatar for user 'DAR'

DAR | December 3, 2009 at 7:34 a.m. ― 5 years ago

Ignorance is bliss. Tec de Monterrey is not a "clinic". It is a high-tech teaching/medical school hospital. Is it in Mexico? Yes. Is it disreputable? No. In fact, it is affiliated with no-name institutions here in the States, most notably Baylor and Hopkins. Now wonder we ALS patients are up a creek without a paddle; with people like Loring doing "research" (who can't even bother getting facts before slandering someone), turn that 4 years into 14. Disgraceful.

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Avatar for user 'bobhamm'

bobhamm | December 5, 2009 at 3:07 p.m. ― 5 years ago

I have had the privilege of knowing Shane for the past 15 years. He is a very brave man, who always looks for the positive in any situation. He has a tremendous gift of faith which has enabled him to reach outside the box to do what he considers necessary to prolong his life.
Shane is to be commended for what he is doing to open eyes everywhere to the battle being fought by ALS patients to gain access to therapies. I can tell you now that Shane will never give up, nor should he! Please join with him to open doors for those who are suffering with this disease.
Shane, you are a hero to everyone who knows you!!!!!!!!!

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Avatar for user 'PhilG'

PhilG | December 6, 2009 at 10:56 a.m. ― 5 years ago

I have known Shane all my life... My sister Claire lost her 5 + year battle with ALS on 5-4-09, www.friendsofclaire.org . Shane upon hearing Claire's ALS immediately wanted to know what he could do for Claire and her family. Even though he hadn't seen Claire in over 20 years, and he lived in California, and Claire and her family lived in Connecticut on the East Coast. Shane sent sweatshirts to her kids and family with the friends of Claire logo on them, send the wine he knew she enjoyed, and was very generous in $s and support and love in general. Him getting ALS 2 years ago I find to be one of life's cruelest and ironic twists I have experienced. Shane continues his fight and remains hopeful, as we all do for him as well. His wife and family are truly wonderful....FIGHT on Brother Shane !!!

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Avatar for user 'kellyf14'

kellyf14 | December 11, 2009 at 6:04 p.m. ― 5 years ago

Shane is my cousin, I've known him all my life and Love him very much.
He is a wonderful Man, Brother, Husband, Father & Friend. What he has to
battle is unforgiving, and the fact that he is fighting back and not giving up is
fantastic !!! You keep on fighting back Shane, and never, ever, give up !!!
The Fitz Maurice's on the east coast love and miss you and send our prayers.

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Avatar for user 'brianfitzmaurice'

brianfitzmaurice | January 2, 2010 at 6:56 p.m. ― 4 years, 11 months ago

Shane is my brother and best friend.

Growing up with Shane was to be around a very physical very active person. Of all the people in my family Shane was the most athletic. He played many sports and was great at them all. He gave this gift to his older son's early in their lives and they are already both very active and talented in multiple sports. I am happy that he has been able to share in his son's early successes in sports.

After Christmas my children and I drove to San Diego to visit Shane and his family. It is a wonderful loving family. They have so much togetherness and joy each day. His children love and respect their dad. His wife Lylin is an incredible mom and wife. To see how she runs that household and cares for her husband is to truly experience love in action. My children loved playing with their cousins and I soaked up the love in that house and didn't want to leave.

Praise God for Shane and for Lylin. Your family are in our prayers every night.

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