Lebers robbed 24-year-old Phil of his vision but he plans to have ground-breaking stem cell treatment to repair his eyesight. This will be the first treatment of its kind and if successful, Phil hopes it will let him see his fiancée Yvette for the first time in three years.

Phil has trouble making out colors and the world appears blurry most of the time due to the nerve damage the genetic condition has caused.

“It is a bit scary being the guinea pig for this,” said Phil.

“But ever since I found out this might be a way of getting my sight back, even if it just makes it a little better, I’ve been up for it.

“Doctors say that in theory it should work,” he added.

Just weeks after he started dating Yvette, the then 20-year-old Phil lost his eyesight overnight.

“We only started going out when he started having problems. But he hasn’t changed a bit,” said Yvette, the 23-year-old customer service worker.

“He has the same sense of humor and outlook on life. He’s incredible.”

Yvette added, “I’m worried about this treatment. But Phil faces the possibility of waking up with no sight as it is, so he really has nothing to lose. But whatever happens, I’ll love him for who he is. He’s my angel.”

During a night out with friends in May of 2003, Phil started to notice his eyesight was getting worse.

“Things were really blurry and I couldn’t make out people’s faces until they were really close to me. It was pretty terrifying. I went to the optician the next day. They said there was something wrong but did not know what and said I should go to hospital. I went to the Southern General in Glasgow and was admitted for two days for tests. I was petrified. I thought I might be dying. My mum, Trisha, died of a blood clot on her brain 12 years ago and I was terrified I had that,” said Phil.

Doctor’s determined that Phil was suffering from Lebers, a condition that affects only about 100 Scots, after conducting six months of tests.

“I’d never heard of it but I have found out it is a genetic illness passed on by a mother to her child,” stated Phil.

“In nine out of 10 cases it is sons who get it, and usually in their early 20s. So I was a classic case.”

In December, Phil will be traveling out of the country for the £10,000 pound stem cell treatment since it is not licensed in the UK. Phil heard of this particular clinic when a story broke that they had successfully treated individuals suffering from multiple sclerosis.

Thousands of stem cells taken from an umbilical cord will be injected into Phil’s body, half in his arm, a quarter in his left temple, and the final quarter in his right temple.

Having the potential to act as a “repair kit”, stem cells are the “building blocks” of the body and can turn into any tissue as well as copy themselves.

The clinic is one of only a handful in the world that presently carries out stem cell therapy.

Doctor’s at the clinic stated, “We’ve never treated this condition before. We could not give Phil any outcome data but could give him an assurance of safety. Stem cells have been shown to repair and regenerate nerve cells so we hope for success.”

“There is so much I want to do with my life and to do it the way I want to, I need to be able to see better. Doctors here say a cure for this in the UK is at least 15 years away.” added Phil. “I have to admit I’ll be totally gutted if it doesn’t work. I hope to have my sight back in time to see my nephew, Connor, open his Christmas presents. He’ll be 22 months and it’ll be the best present ever to see his wee face when he opens his parcels.”

As a result of the condition, Phil has had to adjust almost every single aspect of his life. Simple routines such as brushing his teeth, making a cup of coffee, or even getting dressed are becoming more and more complicated.

Watching football matches, reading, driving, are all now things of the past. Watching TV farther than a foot away from the screen is not possible, and even at a close distance, the picture is completely blurred. He even needs assistance from friends to help him buy the right products in the correct sizes when he goes shopping.

Phil refuses to let the illness get him down, even though the reality is that without treatment he could end up completely blind.

“I have good days and bad days, like anyone. But there is no point feeling sorry for myself. I am determined to get on with my life. I like to feel like everyone else and don’t like people feeling sorry for me,” said Phil.

Taking part in charity events, Phil has to raise all the cash to pay for the procedure.

“It has been a case of thinking of any way I can of getting people to donate. My friends and family have been a great support and I am getting there,” says Phil.

Without his fiancée Yvette, he says none of the fundraising would have been possible.

“She is my inspiration. She helped organize all the charity events and her positive attitude keeps me going. I’d be lost without her. I can’t wait for the day I can see her properly again and to watch her walk down the aisle. I’ll be the happiest man alive.”

Life was crushed for Chris, being diagnosed with MS five years ago; he has lost the use of his legs and is now in a wheelchair. But he has decided to fight his multiple sclerosis by arranging stem cell treatment, eager to reclaim the ability to walk. The 40 year old Chris now imagines playing football with his two young sons and later walking into a pub with them when they are older.

Leaving Chris incapable of walking, with deteriorating eyesight and the inability to control his bowel movements and bladder, the muscle-wasting disease took hold quickly.

After treatments were unsuccessful at the Hunters Moor Rehabilitation Centre in Newcastle, doctors told him there was no hope left.

Caretakers visit Chris’ adapted home, in Centenary Avenue, Harton, South Shields, several times per day; he needs to be hoisted out of bed every morning.

Taking 33 tablets a day to control the symptoms of MS, the daily mix is not his only worry as he was just diagnosed with diabetes this year.

After being accepted into a stem cell treatment program at a clinic in Holland, the thought that he may be able to walk again is the one thing keeping him going. After reading an article about a woman with MS who had regained the ability to walk after being treated at the same clinic in Holland, one of the caretakers told Butler about the clinic.

Chris, the former line manager, needs to raise 13,000 pounds to pay for the cost of the treatment which is still being researched in the UK.

The cost of accommodations and travel for him and two caretakers would take the figure closer to £20,000.

He said: “I can’t move anything from the waist down, and I’ve got pins and needles in my hands all the time. I used to cry and wonder ‘why me?’ I only kept going for my two little lads. I’ve got to keep my head up.”

“I want to walk. I want to be able to play football with my sons. I want to be able to take them for a pint when they are older,” said Chris.

“I know there’s a risk the treatment might not work – I’ve just got to hop,” he added.

He remains close to Kris, 12, and Stephen, nine, who live with their mum, although the illness has cost him his marriage.

Helping to regain movement, the cells restore damaged nerve transmitters and boost brain signals to the rest of the body say doctors. The treatment would consist of stem cells taken from umbilical cords being injected into Chris’ damaged cells.

Affecting more than 85,000 Britons, the cause of MS – the gradual degeneration of the nervous system – is still not fully understood.

The University of Rochester Medical Center just received the largest private donation ever from a Brighton couple to put toward stem cell research.

The couple, Jack (founder of Erdle Corp. in Henrietta) and Norma, did not indicate what variety of stem cell research the donated funds, an sum of $1 million dollars, should be used for.

Prior to Jack’s gift, UR had received some contributions towards stem cell research, but the quantity of donations were not many and each individually were not of a significant amount stated Peter.

Stem cells are the building block cells of all our organs and tissues.

The university inquired about the prospect of Jack contributing; so he went to his wife to see how she would like the money used. She quickly gave her answer.

The couple also donated $1 million to the Rochester Institute of Technology in 1998.

Jack’s company, which he started in the mid-1950’s, makes parts for electrical systems in computer, trains, and airplanes.

“I think there are so many diseases and sicknesses that could be helped with stem cell research — diabetes, Alzheimer’s, Parkinson’s, people who are paralyzed,” said Norma. “Just think how wonderful it would be, the lives we could save.”

The National Institutes of Health have given more than $40 million to The University of Rochester Medical Center to pursue stem cell research that may lead to cures for leukemia, multiple sclerosis, and spinal cord injury.

For the institute, the principal focus has been on animal and adult stem cell based research, as well as stem cells taken from umbilical cord blood due to the federal ban on funding new embryonic stem cell lines.

The NIH mandates that any federally funded programs share no resources with independently funded embryonic research, thus there is a possibility that the university may use a portion of the $1 million to produce the proper environment for research. Peter hopes the couple’s gift will encourage other philanthropists to also donate to stem cell research.

“Downstate medical centers have received millions,” Peter said about their stem cell donations, adding:

“It’s good Rochester is now in that company as result of Jack and Norma’s gift.”

Science fiction was once the genre that best fit stem cell therapy. But for patients suffering from conditions as varied as cancer, heart disease, broken bones, and paralysis, stem cell therapy may soon become science fact.

Stem cells are the building blocks of our bodies that have not yet been assigned special tasks. Think of them as blank microchips before they have been programmed. Stem cells can turn into a variety of different cells, from a heart cell to a nerve cell; given particular chemical signals they can be transformed into anything.

Adult stem cells exist in a wide range of tissues including bone marrow, muscle, the brain and liver. They are already halfway down the career path to becoming a certain type of cell.

Around 600 clinical trials are presently underway worldwide involving stem cells. The UK looks to be a center for more research and may perhaps even set the pace for everyone one else.

New uses for stem cells include treatment for diseases that are major killers and cause long-term disability. For instance, bone-marrow transplants, used for some time as a treatment for leukemia, may soon be replaced with stem cell therapies. Other potential uses of stem cells range from creating new faces and hair, to growing sperm, building replacement limbs, growing new heart cells, and growing new retina tissue for the visually impaired.

Bones
Splints and bandages or casts remain the status quo as treatment for broken bones. This has not changed for many centuries. There could be a shake-up in treatment methods soon as clinical trials are underway evaluating stem cells and their capacity to mend fractured bones. Researchers are looking at the notion of repairing fractures with stem cells and as a growth factor to accelerate bone healing. Osteoporosis, which causes brittle bones, is also a prospective candidate for therapeutic stem cell treatment. Eventually leading to osteoporosis, bone loss exceeds production as we age. Stem cell therapy could restore the balance.

Heart disease
Used in trials to tackle the damage caused by a heart attack, stem-cell therapy is already producing results as well as demonstrating the potential to grow new blood vessels to get around blockages. In the UK, almost three million people have heart disease. Limiting the quantity of damage, growing new heart muscle, and increasing the pumping ability of the heart is the idea behind administering stem cell injections after a heart attack. A second goal, a so-called grow-your-own bypass, involves injecting stem cells to grow new blood vessels and re-route blood and oxygen around damaged areas of the heart.

Plastic Surgery
Stem cells have the potential to make radical changes in this area. Already used on a small number of patients, researchers hope that stem cells can be injected on to specially shaped scaffolds in order to help fill defects in the face. Stem cells taken from the hip bone to close the bone defect in cleft palate is also being investigated by dental researchers at the University of Brescia in Italy.

Dental
The most tantalizing image of stem-cell potential in dentistry is growing teeth, however changes are closer in other areas. Nippon Dental University researchers in Japan have shown that injecting stem cells into the area where a tooth has been extracted can strengthen the bone and support surrounding healthy teeth, while Orthodontists in Naples have found they can get stem cells from dental pulp in extracted molars.

Brain Injury
There is currently no therapy to reverse the effects of brain injury, but studies on animals have shown that stem cells from bone marrow can improve outcomes. Around one in four children who suffer brain injury die as a result. A clinical trial involving children aged five to 14 with a serious head injury has begun at the University of Texas. The hope is that the stem cells will help with repairs. Within 36 hours of injury, the children will be given injections of stem cells to see how it affects their recovery.

Rheumatoid Arthritis
Rheumatoid arthritis, where the immune system attacks healthy tissue, has been treated with stem-cell therapy. Around 700 patients have been treated with stem cells for this illness along with other autoimmune diseases. In this therapy, the old marrow is removed, chemotherapy is given to zap any remaining cells, and stem cells are used to build a new immune system. Research at Leiden University in Holland shows that in about one in three cases, remission has been achieved. Immunologists in America have reported the first case of a woman being treated with stem cells from her sister as opposed to most cases, where the patient’s own cells are used. The 52-year-old was in remission and not needing any drugs only a year after transplantation.

Cancer
Cancer is the disease against which stem-cell therapy has been most widely used. Leukemia treatment is especially important, as success depends on getting rid of cancerous white blood cells and replacing them with healthy ones – usually achieved through a bone-marrow transplant. With more than 400 clinical trials under way, the use of stem cells to tackle cancer has been extended, almost every kind of malignancy is being looked at. In many of the trials, those cells that are killed by the use of chemotherapy are replaced with stem cells.

Diabetes
With type one diabetes, which usually develops in childhood, the body does not produce its own insulin and daily injections are needed. The aim of stem-cell therapy is to replace those insulin producing immune cells that have been destroyed by the body’s immune system. Patients are being given chemotherapy and then infused with stem cells from bone marrow in a trial being run by Northwest University in Chicago: “We hypothesized that reprogramming the immune system will stop immune aggression to the insulin-producing cells, allowing their regeneration,” say researchers.

Paralysis
Superman actor Christopher Reeve, paralyzed in a horse-riding accident, was one of the leading campaigners for stem-cell research. Scientists are reporting success with small numbers of paralyzed patients, although large clinical trials are still in the future. The idea behind the therapy is that the stem cells can grow into nerve cells to replace those that are permanently damaged, and bridge the gap between the severed pieces of the spinal cord. Researchers in Argentina are reporting the restoration of movement in two patients.

Crohn’s Disease
Thought to be caused by immune cells attacking tissue, Crohn’s disease is a bowel disorder. A trial is looking at the use of chemotherapy followed by an infusion of the patient’s own stem cells. “The purpose of the chemotherapy is to destroy the immune system completely. The purpose of the stem cell infusion is to restore the body’s blood production,” say Northwestern University researchers.

Multiple Sclerosis
In MS, myelin, the protective coat that surrounds nerve cells, is damaged or destroyed by immune-system cells. The aim of stem-cell therapy is to use chemotherapy to destroy the malfunctioning immune system, and repopulate it with stem cells. A pilot study found that 18 of 19 MS patients stabilized or improved after treatment, according to the US National Institute of Allergy and Infectious Diseases and the Immune Tolerance Network, who are sponsoring one trial.

Neurological
Parkinson’s and a number of other neurological diseases have hope in stem cell therapy. To replace cells lost to the disease, the idea is to coax stem cells into becoming dopamine-producing nerve cells. The treatment being explored is transplanting stem cells into the target sites of the brain that need dopamine. Dopamine is a chemical that allows messages to be sent to the parts of the brain that co-ordinate movement. Animal studies are under way.

Twenty-seven year old Scott from Balby in the UK has suffered from multiple sclerosis most of his life. However, today Scott is on his way to Holland to undergo the first stage of a stem-cell based treatment that he hopes will transform his life and defeat his terminal illness. Unable to feed himself and confined to a wheelchair, Scott hopes the injections will help him walk again.

Scott’s mother, Sue, said: “We know there are no guarantees with this treatment, but we realize it’s the best chance Scott has.”

The treatment involves three days of intense therapy, and patients that decided to undergo the procedure claim their condition significantly improved.

Scott could start to experience therapeutic benefits within months.

In the Dutch city of Eindhoven, Scott is set to receive “aqua tilis” therapy in a clinic today. The procedure requires Scott to sit in a cabin for approximately half an hour while being surrounded by water vapor which will enter his body’s pours, a process which facilitates detoxification and increases the chances of the stem-cell treatment being successful.

Scheduled for tomorrow at a clinic in Rotterdam, Beanlands’ appointment will involve injections of umbilical cord blood stem-cells into his body.

The hope is that the healthy stem-cells will replace the diseased or dysfunctional ones in Scott’s body, and become a new life-long repair system.

The treatment costs £13,000, much of which was raised by Leicester Mercury readers after we first told Scott’s story.