Touching Lives - March 2009
A new chapter begins
##Pride in the past
Children have always been at the heart of what we do. Founded by a father whose daughter had contracted polio, the charity played a crucial role in the development of the UK polio vaccine, and has since helped enable many medical advances for the benefit of children today. These include:
* funding the design of the shapeable Matrix seating system which provides body support and seating for children and adults with severe physical disability
* developing ‘growing’ prostheses to replace young limb bones requiring amputation
* establishing the Paediatric Pain Profile for assessment and relief of pain in children who are unable to communicate how they are feeling
* developing new diets for children suffering from severe liver disease
* identifying the faulty gene responsible for causing an inherited form of cleft lip and palate
* campaigning for more thorough testing of medicines for use in children
* introducing new tests to improve the assessment of teenagers with developmental coordination disorder (dyspraxia).
We are proud of all these achievements, but there is still much to learn about how to prevent or treat both common and rare childhood diseases. Our expert scientific advisors are currently reviewing applications for our first round of funding under the new remit, but we already have several research projects underway searching for answers to some of the serious threats to the health of babies and children, including:
* developing a new seat design to improve quality of life for children with disabilities
* investigating genetic factors behind learning disability and ADHD
* searching for new vaccines and treatments for life-threatening infections like meningitis and septicaemia
* understanding the causes of pneumonia in children
* improving treatment for inflammatory muscle disease
* assessing the effectiveness of new drugs used to treat rare metabolic diseases.
##Research really does change lives
Supporter Sue Calvert knows from experience the importance of one particular medical advance that, today, we take for granted. Here’s her story.
Sue Calvert’s second son Matthew was born 29 years ago, with spina bifida – a condition where the spine does not develop properly in the womb. Sadly, after just a few hours, Matthew died. Sue vowed never to have any more children. “I wasn’t going through that again”, she recalls.
Then one day Sue received a letter from a Professor Dick Smithells of Leeds University. Professor Smithells had received funding from Action Medical Research to carry out a clinical trial to prove his theory that women taking vitamin supplements, including folic acid, before and during the early weeks of pregnancy would be at significantly lower risk of having a baby with spina bifida. He urged her to get in touch should she ever consider having another child.
Some time later, but with Professor Smithells’ words of hope still fresh in their minds, the Calverts began thinking about just that. Sue and husband Bill travelled from their home in Thirsk,Yorkshire, to Leeds to meet the Professor, who invited Sue to join his trial. Participants were required to take the vitamin supplements in the form of 3 large tablets per day. Sue began the course and five months later became pregnant. Sue continued to take the tablets until the 8th week of pregnancy, as advised by Professor Smithells*.
Sue remembers, “If it wasn’t for the hope that this research offered of a healthy baby, I wouldn’t have considered another child. I was still so terrified that what happened to Matthew would happen again that I didn’t even tell anyone about the pregnancy.
At 18 weeks I had an amniocentesis [a sample of the amniotic fluid surrounding the fetus is removed and analysed for abnormalities – Ed]. The result would tell us whether or not the baby had spina bifida. The test was negative, but my head was still filled with worry.
“Thankfully my fears were unfounded and I gave birth to a bouncing baby boy, William, now 25 – a younger brother for our other son James. Looking back I feel incredibly proud to have helped give doctors knowledge which many women now take for granted.”
Sue’s knowledge of the benefits of medical research has inspired her to become one of Action Medical Research’s busiest fundraisers. “Before I became involved with the charity I never spoke about Matthew, but now when I’m fundraising I find myself talking quite openly about him and my links to the cause. I proudly refer to myself as a ‘guinea pig’. People must understand that we need medical research to live, to move forward.”
*It is now known that folic acid supplementation reduces the risk of a baby having a defect of their spinal cord such as spina bifida. Current guidelines on taking folic acid in pregnancy recommend a daily 400 microgram (mcg) folic acid supplement from the time contraception is stopped until the 12th week of pregnancy.