Story
Thanks for taking the time to visit my JustGiving page.
I will be running Manchester 10k in memory of my sister Tara, who died of Miller Dieker syndrome, at the age of 2. On March 8th 2020, Tara would have been 25.
The disorder arises from the deletion of part of the small arm of chromosome 17p. Miller-Dieker syndrome is a condition characterized by a pattern of abnormal brain development known as lissencephaly. Normally the exterior of the brain is multi-layered with folds and grooves. People with lissencephaly have an abnormally smooth brain with fewer folds and grooves. These brain malformations cause severe intellectual disability, developmental delay, seizures, abnormal muscle stiffness, weak muscle tone and feeding difficulties. Most don’t survive childhood.
I want to both raise awareness for the rare disability as well as raise money for Derian House, a children’s hospice. During the final hours of my sisters life, a nurse from Derian House stayed with my mum, dad and Tara until the end, even though her shift had finished and she had no duty to be with my family. For that kind act, I want to support the work they do for 100s of families who have disabled children and help families whilst their poorly children are having end of life care.