Tributes to our brain donors
"Until quite recently we were the parents of Sam, an adult with autism. It is comforting to know that he is helping others in this very special way and for the benefits of this special research."
Mike and Julie Lewin
Jamie had Asperger's syndrome and cystic fibrosis. He went on to develop liver disease, osteoporosis and diabetes. Aware of the likelihood of an early death, he made his parents promise that they donate his body to medical research. his aim was that, through research, the lives of others would be improved. His parents, Liz and Mike, can be seen discussing their memories of him in a video they made for our website.
"Our son Sean was, and always will be, our beautiful boy. He was taken from us at the age of 21, suddenly, without any warning. He was in the final year of his aerospace engineering degree but had already been accepted onto the Masters’ course. He learned to read at the age of three - or should I say he started reading at the age of three because he never really ‘learned’. One day he just knew how to do it. That’s how it was with him - his brain was like a sponge - he absorbed anything and everything. He was witty and wise. Those who were lucky enough to be his friend were blessed to have someone they could always rely upon.
The decision to donate his brain - that magnificent, defining part of him - was not easily made. It is not the discussion you have with a healthy young man. However it will always be a comfort to us to think that something exceptionally important may result from the study of our exceptional son.
We are so very proud that Sean’s brain will be part of the Brain Bank for Autism – he would have made a difference had he lived and, through his donation, we are sure he still will."
Evelyn, who died when she was aged 44, had Asperger’s syndrome. Her mother, Charlotte, writes:
"Evelyn had great courage. After she realised that she had a terminal illness, she did some research on the internet and she said one day, ‘Mum, you may think that this is a terrible idea but, when I die, I want to give my brain to the Brain Bank for Autism at Oxford University.’ However, my reaction was that it was a wonderful thing to do.
Since then, I’ve supported her in carrying out her decision in every way I can. She felt that making this donation gave her life more purpose and she died with such grace and dignity, knowing that her gift could help future generations."
"My grandson Valentino (or 'Duke' as he was known within the family), had autism and sadly he died in September 2008. I had cared for him throughout his life and was his next of kin. At the time of his death, I read an article about the new Brain Bank for Autism in the National Autistic Society's Communication magazine and I decided to donate Duke's brain for research into the causes of autism. When a loved one dies, it is the worst time to try to make decisions but this has proved to be my one positive way forward after his death. For me, he shone as a lovely cherished human being and I have been devastated to lose him. But I believe that my donation, and the others which are made, will provide hope that in future years there will be a much better understanding of autism and of children like Duke."
Alice, who died aged 13, had a rare chromosomal disorder and autism. Her donation was the first to be made to the Brain Bank for Autism & Related Developmental Research when it was set up at Oxford University. During her short life her parents always tried, in whatever way they could, to help her to have as good a quality of life as possible. At the time of her death, her parents said that, although they had lost their beloved Alice, they found some consolation in being able to help others by donating brain tissue to further research into autism and related conditions.
Four years after her death, Alice’s mother now adds, "It may help others who are considering brain donation to know that, for us, it was very positive, at a time of tragedy in our lives, to be able to make this contribution to scientific research. As our lives have moved on, we look back on the decision we made then as clearly the right one."
Lorna Wing has written about her experience of her daughter Suzie’s donation to the Brain Bank for Autism. This is published in the Spring 2011 edition of the Communication magazine, published by the National Autistic Society.
"In September 2005, my husband John and I lost our daughter Susan. She was 49 years old and had been diagnosed as having autism at the age of three. We wanted her brain to be donated for research and arranged for its safekeeping by scientists, until it could be used in this way. It is now in the care of the Brain Bank for Autism and Related Developmental Research at Oxford University. In April this year, John died. He pledged to donate his brain to research in his will. I have done the same. I will always miss and mourn Susan and John, but I will always be glad that their gifts and mine may benefit others.
I believe that it is only through research on the brain – with brain imaging and electroencephalograms that record electrical activity in the brain – in life, or post-mortem examinations after death – that we can develop understanding of the neurology underlying any aspect of human life. Autism is particularly complicated. The whole spectrum includes people of all levels of cognitive ability from those who are profoundly disabled up to those of 'genius' level.
The aim of brain research is to identify the causes of the specific disabilities affecting social interaction, social communication and social imagination in all cases, and other aspects of cognitive and motor skills in many. It will also shed light on the special positive skills. These may be shown in, for example, remarkable memory, mathematical ability, visuospatial skills and musical talent. Some people may have remarkable vocabularies, even if other aspects of language are not so good.
I hope that everyone involved – people with autism, their families and professionals – can appreciate how research into brains, in life and in death, might lead to ways of encouraging positive skills, as well as ways of overcoming disabilities. Those of us, like me, who are happy to donate their brains for post-mortem research, are making a positive contribution. I do understand that some may have emotional objections to this type of research but hope that what I have written does help you to understand my point of view. There is certainly no pressure to donate on anyone who feels uncomfortable about doing so, but the main barrier to developing understanding of autism through this research is the lack of donated brain tissue. So I hope that everyone in the autism community will give this issue their consideration."
Dr Lorna Wing