The Jennifer Trust
Type I Spinal Muscular Atrophy, or SMA, is the biggest genetic killer of infants, yet very few people have heard of the disease.
SMA is a rare neuromuscular condition, which is genetically inherited from the parents of the children. If both parents are carriers of the defective gene there is a one in four chance that their baby will inherit this condition, and unfortunately 1 in 40 people are unknowingly carriers of the defective gene.
SMA blocks the links between muscles and the brain, causing muscles to waste away. Babies with Type I, the severest form, may only live for weeks or months, whilst children with Type II often reach early adulthood, but are generally unable to stand or sit up without aid.
This condition is unfortunately all too familiar to Siobhan Whitfield and her family, as she lost her daughter Mollie to Type I SMA late last year.
"Mollie was six weeks old when we were having some issues with breast feeding. We were living in Australia at the time, and the Australian midwives are very very keen that you continue breast-feeding, so we attended clinics with Mollie.
"Because Mollie hadn’t put on weight over a two week period a consultant looked her over and commented that she wasn’t kicking her legs very much. He did various tests, x-rays and scans to see if there was something that could be picked up from that.
"Because they all came back normal he said he needed to rule out Spinal Muscular Atrophy with a blood test. A week later that result came back positive and we were told that Mollie had SMA Type I and would not see her 1st birthday."
Siobhan, like so many families who find themselves in a similar position, found her daughter suffering from a condition that she had never heard of. This is where The Jennifer Trust stepped in to help Siobhan and her family get a better understanding of SMA.
The Jennifer Trust was set up back in 1985 by Anita Macaulay following the death of her daughter, Jennifer, from Type I SMA. The trust is the only national charity in the UK dedicated to providing both support to people affected by SMA and essential research into the condition. They also provide an outreach service to support families whose babies are born with SMA, something which greatly benefited Siobhan and her family.
Siobhan found out about the Trust from her brother who was living in the UK and once they got in touch, the Trust was there 24/7 to help Siobhan and her family through the difficulties that they were now facing, providing help that she simply couldn't have done without.
"Personally their support was invaluable. When we arrived back from Australia in December of 2007, they came to the house within two weeks, bringing us a box of warm clothes for Mollie, because they knew that we wouldn’t have many, as well as providing a box of multi sensory toys.
"Our support worker Claire Holdcroft was absolutely fantastic and really and truly she has become a part of our family."
While Siobhan cannot fault the care given to her daughter, it was the advice presented to them on how they should care for Mollie, and the support given to them by the Trust that was second to none.
"I personally can’t fault the care provided (elsewhere) because I was so well informed by The Jennifer Trust. Had I not been as well informed, then the care being provided would have been very much palliative care; which is take your baby home, keep them comfortable and they will die when they die.
"These babies are still very bright and alert and interactive, even though they often can’t move their arms and their legs; they are so clever, it just seems so unfair to let them go home and fade away.
"Mollie did not go home and fade away. We dedicated our lives to her and armed with the knowledge from Claire and The Jennifer Trust team, we managed to keep Mollie free from illness until 19 days past her 1st birthday, when she heartbreakingly passed away from respiratory failure.”
Since the death of Mollie last year Siobhan has been working to help raise the profile of Spinal Muscular Atrophy and The Jennifer Trust. She has become involved in fundraising and spreading the word and she is delighted that they have been recognised by The National Lottery Awards in the Best Health Project Category.
"I’m just the mummy of a beautiful baby who died from a horrible condition and I am doing my utmost to raise awareness and fundraise through my local community to provide as much support as I can to a small and very important charity."
The Jennifer Trust’s Spinal Muscular Atrophy Outreach Service has reached the finals of The National Lottery Awards and if you want them to win, then here's how to vote:
- You can go online to www.lotterygoodcauses.org.uk/awards under Best Health Project,
or
- Call 0844 686 3270.
Voting closes at midday on Friday 14th August.
FemaleFirst Helen Earnshaw.