Ana Medeiros vividly remembers the moment that her world fell apart.

At 5 p.m on Friday, June 13, 1998, in a cold hospital room, a doctor told her that her beloved seven-year-old son Jeffrey had the rare and terminal illness Duchenne Muscular Dystrophy.

Having walked in to what she thought was a routine doctor?s appointment, she left facing the devastating news that her once-healthy child was unlikely to live beyond his 20s.

Ever since that fateful day, Mrs. Medeiros, 38, and husband Norbert, 43, have been struggling to cope with the isolation of living with a seriously-ill child in Bermuda. Jeffrey, now 14, is believed to be the only patient from the Island ever to have ever been diagnosed with Duchenne, a genetic condition which affects one in every 3,500 boys and causes muscle wasting and cardiac and respiratory failure.

?Living in Bermuda puts us at a great disadvantage as we have no support group to assist with queries or at times of sadness. I rely on the support of my friends and some family members for my mental wellbeing,? said Mrs. Medeiros, from Whitney Avenue West, Pembroke. ?There is so much ignorance and so much that is unknown about this devastating illness.?

Jeffrey ? who she calls her ?gentle giant? ? was born a healthy baby boy and had a normal childhood until aged two-and-a-half when his nursery school teachers noticed that something about his development was not quite right. Initially it was thought that he had a hearing problem but tests ruled this out.

After what Mrs. Medeiros recalls were ?many agonising months of worrying,? she took her son to Boston Children?s Hospital and Spaulding Rehabilitation Center, also in Boston, for extensive tests.

?Jeff was diagnosed with Pervasive Development Disorder ? a mild form of Autism ? by both establishments. The news was not good and it was extremely difficult to come to terms with this diagnosis. That was when our turmoil started,? she said.

However, Jeffrey thrived at pre-school and led a relatively normal life despite his condition until the next devastating blow came in summer 1998, when at the age of seven he began to experience mild seizures.

He was admitted to Boston Children?s Hospital to be monitored and his parents were told for the first time that he might have some form of Muscular Dystrophy.

?When the doctor mentioned this I had a sense of relief. I had never heard of this but it did not sound serious ? not like liver disease or heart disease. Boy was I in the twilight zone! ? said Mrs. Medeiros.

?Then, on Friday, June 13, 1998, I was given the death sentence diagnosis by an extremely unsympathetic doctor. I remember being in a cold hospital room with Jeff and my husband and another couple who were sharing our room with an eight-month-old baby boy with cancer. I still remember what I was wearing and the cold sweat that overtook me when the doctor blurted out that Jeff had Duchenne Muscular Dystrophy and that he would not live much past 20. I don?t remember saying a word. I just remember staring at this man and wondering what he was talking about. This doctor then proceeded to advise me to never have any more children as any boys born to me would inherit his genetic illness. After this doctor finished flapping his lips and ruining our lives, he left the room without a kind word and I have never seen him again.

?My hell started that day. When I came back to Bermuda I was in shock. I had no idea how to cope. I lived in a daze and I could not eat or sleep. I could not even accept the shoulder that my husband was offering for comfort. I lived in a black cloud for a few years wondering what was happening.?

In fact, it took several years before Mrs. Medeiros felt able to talk about the situation with her friends, and began on the long road towards coming to terms with what was happening.

?I am often asked what it?s like and how I cope with raising a child with a terminal illness. The answer to that is I have no idea. I just take it one day at a time. I deal with one trauma at a time,? she said. ?I don?t think anyone can imagine the mental and emotional turmoil that a parent of a terminally ill child goes through. I did not ? not until it happened to me. It is agonising and it tears at your heart every single day. You are helpless. You see your child suffer and there is nothing you can do to ease the pain or the outcome ? his death.?

The progress of Jeffrey?s illness, which affects every muscle in the body means that he lost the ability to walk at the age of ten. He has heart problems and respiratory difficulties. In October 2004 he underwent risky spinal fusion surgery at Boston Children?s Hospital, which he was deemed unlikely to survive.

?Here we are a little over a year later and Jeff is a miracle. He is still with us and thriving beautifully. There is something to be said for the power of prayer!? said Mrs. Medeiros.

While she knows that there is little hope of a cure for Jeffrey, she is still placing faith in medical scientists who are doing pioneering work in the area of stem cell research.

?Despite medical advice not to have another child, my husband and I decided to have another baby. Being Roman Catholic we were not going to consider genetic counselling nor abortion so it was a huge chance. If we had a boy he would have inherited the illness but Duchenne Muscular Dystrophy does not affect girls and we were blessed in May 2003 to have a healthy baby girl ? Gabriella,? she explained.

?We saved her cord blood for Jeff as so much work is being done on stem cell research and a portion of her cord blood was also sent to Harvard Medical Center in Boston for stem cell research.?

Meanwhile, she is determined to take all practical steps to make Jeffrey?s remaining years as happy as possible. In a bid to give their son the very best of everything, Mr. and Mrs. Madeiros spent $67,000 in 2004 alone on specialist equipment such as a bed, a bathtub chair and hydraulic hoist, and a car that could transport him and his wheelchair.

This meant that they found it impossible to come up with the sum of around $6,000 necessary to buy Jeffrey a new wheelchair when he outgrew his old one. However, the Bermuda-based charity Committee of 25 for Handicapped Children came to their rescue and paid the full amount.

?His old chair was grossly too small for him and he needed a chair that tilted during the day to give his spine some relief,? said Mrs. Medeiros.

?The new chair was the greatest Christmas gift for Jeffrey as he could only sit in the old one for a short time before he would start crying with pain, meaning he had to spend a lot of time in bed. Thanks to the new chair he was out this New Year?s Eve until 2 a.m. at Elbow Beach, full of life.?

Mrs. Medeiros is incredibly grateful to everyone who has helped her family cope over the years ? those who have helped her cope ? her family, Jeffrey?s many doctors nurses and therapists, and the staff of Dame Marjorie Bean Hope Academy who care for Jeffrey during the day while he is at school.

?With each passing birthday I know that his time on earth is running out. At times the thought is too much to think about and I just put a stop to my thoughts, but I now look around at my many blessings and try to be happy,? she explained.