Marc Patrick Coffey

Marc was bora on 30 December 1964 in Jersey, Channel Islands and the following summer he got badly sunburned although he had not been exposed to the sun. When he was about 2 or 3 yrs old it was noticed that his coordination was very poor and that he also had a tremor. Following investigations locally he visitedGreatOrmond Street Hospital, London who thought he had cerebellar ataxia.

Marc continued t lead a relatively normal life but academically and physically he did not keep up with his peers and his gait was very poor. He was able to hold conversations and had a very good memory of events but was unable to read or write. He had a good appetite and was able to feed himself provided his food was cut up for him.

He continued to visit Great Ormond St. Hospital and it was not until he reached the age of 17 that they diagnosed Cockayne Syndrome. We were advised that due to the fact Marc was doing so well, his deterioration would be very slow and they estimated that he could live to his late 20’s or early 30’s.

As time went on Marc did deteriorate over several years. His gate got worse and eventually he was unable to walk without assistance and in later years needed a wheelchair. He eventually became incontinent and lost his power of speech. At his stage, we found ourselves needing some assistance in giving Marc the best quality of life possible and we shared his care with a wonderful place called Orchard House. Last year he began to refuse to eat and was eventually given a PEG feed into his stomach. This was mainly due to the fact that a lot of the time he did eat, he had to be suctioned afterwards. Marc did not like this and after about 2 weeks he actually pulled the tube out. It was decided that it was too dangerous to repeat the PEG and to dangerous to feed him orally, so an IV drip was placed under his skin so that he would not be too dehydrated. Marc eventually died very peacefully on Monday i October amongst his family and the staff of Orchard House.

We hope this will give other parents and caregivers hope that it is possible for some of these children to have a good quality of life and to live on past expectations because Marc was almost 37 years old when we lost him.

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