Grace was born earlier than expected on the 9th March 2017 and was quickly released from the maternity ward as a healthy baby. However after lengthy tests and scans she was diagnosed on the 26th of April with Ohtahara Syndrome.The condition she has been diagnosed with is incredibly rare, effecting only 1 in 1,000,000, and is relatively new in being discovered, but the effects are devastating and will result in Grace’s life expectancy being cut tragically short. O.S is a progressive epileptic encephalopathy. It is extremely debilitating progressive neurological disorder involving intractable seizures and profound mental and physical retardation. Grace will remain totally dependent upon her parents, Tom and Tawnie, and her life expectancy will be terribly short with a prognosis of two years life expectancy. This diagnosis has been absolutely devastating for her parents to come to terms with and they now need to change so much of their lives, including working habits, to enable them to look after their daughter and spend very special time with Grace.Tom and Tawnie got married in 2014 and it was a truly magical day. Tawnie is the sweetest, kindest and most considerate person you will ever meet & she will now become a full time carer for Grace for the short space that she will be with us. Tom has served his country as part of the armed forces for the last 10 years and served all over the world. For Tom and Tawnie the last 18 months have been about thinking about starting a family as they are both incredibly family orientated and raising a family together was to be their Utopia future that they had both worked incredibly hard for but they are now faced with a new reality to what they had expected and are trying to come to terms with their daughter’s condition. We know money cannot change Grace's condition but please donate whatever you can to help ease the financial burden x