They discovered that research was further ahead in the USA and that treatments were being developed that, if commenced immediately at birth, may stop or slow down the progression of the disease. Ken began to use the internet to support the families living with, or bereaved through, Krabbes disease and in 2008, Pat launched Save Babies Through Screening Foundation UK.
More babies have died in the UK since Evie including Jack MacPherson. Wee Jack Mac was diagnosed with Krabbes at 6 months old and lost his fight age 21 months old in 2008. His mother Melanie is a Trustee of Save Babies and she is determined to work hard to try and get newborn screening extended in the UK so that babies’ lives might be saved.
Please read more about Wee Jack Mac and Evie and the work of Save Babies UK at www.savebabiesuk.org
This is my very first half marathon and I have been training hard to make sure I can succeed in making it across the finishing line and raising some much needed funds to help Save Babies work go from strength to strength.
Thank you for your support
