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Points for Reflection

1.What type of support would be offered today for somebody in David’s position?

2.How would you support siblings?

Activities

Consider the following questions:

1.What type of support would you provide young children / young adults who were being tested?

2.When should they be tested and who should make the decision?

3.Who should organize and oversee the testing process?

For further information on these issues and to see if there are any points you may not have considered, refer to Clarke AJ (1997) The Genetic Testing of Children. In Harper PS, Clarke AJ (eds) Genetics, society and clinical practice. BIOS, Oxford, p15-29

Quotes

“His death was a devastating shock to me. Yes, he had been unwell, but I had no notion that death was imminent.”

“…one boy put a dampener on things when he announced in the yard “your brother can’t paint, he’s in a wheelchair.”

“Towards the end of his life, David wrote poems and the mood of his paintings changed - they became very ‘dark’.”

“A week or so prior to David’s passing, I remember that we were visited by more relatives than usual. It’s obvious now that they came to see him for the last time”

“All my parents wanted was for him to give David something for the pain to ease his suffering.”

Further information

Muscular Dystrophy campaign website: http://www.muscular-dystrophy.org/

US National Library of Medicine, Genetics Home Reference: Duchenne and Becker muscular dystrophy.

Organisation specifically for siblings: http://sibs.org.uk/


Location: The Stories
Transcript

You can download the full transcript here

Heulwen’s story: my brother David the artist
A family journey with the X-linked condition Duchenne muscular dystrophy

My beloved brother David passed away in the early hours on the 29th of December 1968. He was 21yrs old and I was 11 yrs old. His death was a devastating shock to me. Yes, he had been unwell, but I had no notion that death was imminent. My parents on the other hand knew and had been painfully aware what his deterioration meant.

You see David had Duchenne Muscular Dystrophy – a progressive sex linked inheritance disease. He had spent some time at a children’s hospital where the diagnosis was made. I have a photo of him sitting on the grass in the hospital ground and a letter he had written to us from there.

I had always known David as a wheelchair user and saw nothing unusual in this. His friends would call round to push him to school (he went to the mainstream school) or to take him to the pub and so on. Indeed he led a very ‘normal’ life, which on reflection, was due to my parent’s attitude and support of the people in our local community. There was very little input then by the ‘authorities’. Family and friends would step in to help out when needed. For example, if on the rare occasion both my parents had to be away from home (usually to attend a funeral) a neighbour would come and keep us company. There were no support workers or respite care available then. The only medical input I remember is David going to the local clinic for physiotherapy.

At the age of 15 David was told he could no longer attend school because his next classroom was up stairs and the school could not accommodate him and no alternative was offered. With time on his hands David concentrated on his paintings. He used light weight mediums such as inks and pastels, oils were too heavy for him. He had a few local exhibitions, and a particularly exciting time for us was when he exhibited at the Woodstock Gallery, London. His photograph was in our local newspaper and I remember taking it to show teachers and friends at school, but one boy put a dampener on things when he announced in the yard “your brother can’t paint, he’s in a wheelchair”.

Towards the end of his life, David wrote poems and the mood of his paintings changed - they became very ‘dark’. There came a time when he was no longer able to paint as his muscles became weaker and weaker. Swallowing was difficult for him and he would often choke. I must have been aware that David had Muscular Dystrophy because at Christmas we had the Muscular Dystrophy Group’s charity Christmas cards to sell to family and friends. I was not aware of the progressive or hereditary nature of the disease until after his death.

A week or so prior to David’s passing, I remember that we were visited by more relatives than usual. It’s obvious now that they came to see him for the last time.

I awoke in the early hours to a lot of commotion. Lights were on, my parents were up and David was calling out. He was obviously distressed and in pain. I was told David was ill. We did not have a telephone in the house then, so my dad used the kiosk at the bottom of the road to call the GP. He did this three times and three times the GP refused to come out- he said there was nothing he could do. All my parents wanted was for him to give David something for the pain to ease his suffering. He did come after David died and he wrote ‘ischemic heart disease’ on the death certificate. My parents complained about the GP, but the panel decided that nothing could have been done to save David, (my parents knew that) but that perhaps he should have attended the call sooner. No action was taken against him.

A lot of people came to see us in the three days before the funeral. My mum’s second cousin came one evening, I was still crying and so she sat with me on the settee and gave me a hug. She brushed my hair with her fingers and I closed my eyes and could feel myself drifting while she and mum talked. I did not sleep and heard my mum tell her that when I was a certain age blood tests would be done to see if I was a carrier. At that time, this did not mean much to me, but I was concerned about having to have blood tests.

When I was 14 mum and I went to our local hospital for our blood tests. Both results were low; mums were lower than mine. The tests were repeated on both of us at the teaching hospital prior to my marriage in 1984. The results showed that the risk of mum or I being carriers were low down in the normal range. Although the results were reassuring, David did have Muscular Dystrophy.

Our beautiful daughter was born in 1986. I did not want the baby’s sex detected prior to the birth as that would only have given me the option to terminate a boy. There was no test to detect if the baby had Muscular Dystrophy.

Later, Heulwen adds:

The testing process was a simple blood test. I was aware of the possible risk of being a carrier after the initial tests. At 14, I was told I would be offered a termination if I carried a boy. For a long time (teens to early twenties), I had convinced myself I would not have children so as to avoid any dilemmas.

I do compare what is available now for individuals and families with what we as a family had in terms of support; both practical & financial from the state. At the time it wasn't there so we just got on with things as best we could. Even bereavement support was not there. I researched the condition myself via books. I was referred to genetic counselling prior to getting married after I requested it from my GP. This was just another series of blood tests though.

As my mum’s and my risk are low, I was told that my daughters' risk would be lower. She is aware of MD but I have not made a big issue of it so that she would not have a cloud over her head as I feel I did since my teens. But that's her story…

We have not been contacted by anyone regarding testing.

Since we feel very fortunate to have had a daughter, my husband and I made a conscious decision not to have more children. Had she been a boy, no doubt, I would be looking out for the signs and symptoms of muscular dystrophy.