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July 1, 2006

 
Resident Has a Double Scenario: Stem-Cell Therapy
in India for MS, And to Film It and Show the World
by Gianna Pontecorboli

"The worst I risk is that nothing happens," says Toni Spottswood. But if, as she strongly believes, she will come back walking again, "people will be able to see that there is an option there."

Sixty-two years old and a resident of Roosevelt Island since 1977 when she moved to New York from Boston with her husband and two children, Toni is about to embark on a challenging double mission. The first is to get rid of her wheelchair – to be able to walk again. The second is to show in a movie, moment by moment, that stem-cell therapy can work for her and for thousands of other people. "My hope is to put a little pressure on George Bush, the Congress and the Religious Right," she says.

When she was 32, a bad flu left her with fingers tingling all the time. At first, doctors dismissed it but, a year later, the diagnosis was Chronic Progressive Multiple Sclerosis, a disease with no cure and gradually worsening symptoms.

"I was young and I had two young kids," she remembers, "and I decided that I could not procrastinate any more. I wanted to become an interior designer, so I went back to school. For three years, my life was all cooking, doing laundry, attending lessons, and doing homework. But at the end I could have my own design firm. Peter Jennings was one of my clients."

Unfortunately, slowly but surely, the disease progressed. Toni was falling, and then not even the crutches were enough. For the last seven years, she has been forced to use a wheelchair. "Everybody was telling me to accept it, but I can’t. I am not miserable, but I am always looking for possibilities. I tried diets, physiotherapy – everything but the so-called ABC drugs (Avonex, Betaseron, Copaxone), because they cost more than $10,000 a year and all they do is delay the progression."

Finally, it was a documentary about Christopher Reeve that gave her the hope she needed. In many countries, stem-cell therapy is already a reality, and Toni found a doctor in India who already has four MS patients and can do the therapy for a fraction of the cost charged by clinics in Europe. So, in December, she will leave for New Delhi with her mother, a friend, and a health aide. The treatment will last three months, and she will have a stem-cell injection every day. "A doctor in Mexico now does it with a single injection of 1,500,000 stem cells, but my doctor cannot do that,’’ she explains.

For herself, Toni needs very little. Her kids, her former husband, and the many friends she has on Roosevelt Island are all very supportive; her mother is helping with expenses. But all this is not enough. And that is the reason why she will also be taking along Randeep Kumar, a young movie director whose documentary, The Light of Khiwa, was selected at the South Asian international Film Festival. With his camera, Randeep will shoot the treatment and her progress step by step.

"The movie will cost a lot – about $162,000, but Randeep has agreed to be paid when we collect the money," Toni explains. Right now, this is her job. On July 13, there will be a fundraiser at Gallery RIVAA featuring Krithika Rajagopalan, a classical Indian dancer, and the Urdu poet Roshan Pukhraj. "I sent out hundreds of invitations and I am already receiving the first contributions. I have wonderful friends on the Island who are helping me to put the invitations in the envelopes," she says.

In the future, there will be another step. "I want to create a website and collect money to help other people with MS. I want them to know that they have an option."

 

 

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