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On 4th July 2014, Tom's brother Ed and his wife Robyn were thrilled when their beautiful baby boy, Noah, was born. The first five months of Noah's life were the happiest they had ever been.

Just before Christmas they took Noah to see a pediatrician, as they were becoming a little worried about his lack of leg movement. They expected to be told that he may need some physio, but to their utter dismay were told the news that Noah probably had a serious neuromuscular condition.  In early January, when Noah was 6 months old, it was confirmed that he has SMA Type 1.

SMA stands for Spinal Muscular Atrophy. It's a genetic disease that is currently incurable. One person in every forty is a carrier of the defective gene that causes SMA and if both parents are a carrier, their child has a 1 in 4 chance of having the disease.  In the human body, messages travel from the brain, down the spinal cord along motor neurons to the muscles. In a person with SMA, these messages can not get through. This means the ability to control the muscles gets less and less to the point where they get weak and waste away. SMA Type 1 is the most severe form of the disease and is generally picked up by the time a child reached 6 months. It is the biggest genetic killer of under 2's in the UK. About 80% of babies with SMA Type 1 sadly pass away before their first birthday. 

Currently Noah is very weak in his legs, back and neck and has limited movement in his arms, however SMA does not affect the brain at all and he is one happiest babies you could hope to meet. Noah has the most beautiful big brown eyes, a cheeky smile and is always giggling and laughing! Ed and Robyn are determined to stay positive and to enjoy every single moment they have with Noah. They feel blessed to be his parents. 

When they were first told that Noah was poorly, Ed and Robyn called ACT for SMA. The very next day Emma and Karl drove down from Lincoln to see them. Emma and Karl are the founders of the Ally Cadence Trust for Spinal Muscular Atrophy. They lost their beautiful daughter, Ally, to SMA Type1 six years ago. Following their experience they felt that parents with recently diagnosed children needed support and information quickly. They set up ACT for SMA to try and generate a new line of funding and to raise awareness of Spinal Muscular Atrophy nationwide and to provide support to affected families. Emma and Karl came to see Ed and Robyn so quickly and spent hours with them, answering questions and discussing their experiences. They also brought with them a new travel system for Noah, sensory light weight toys for him, monitors and a camera. They advised Ed and Robyn to start doing activities with Noah, such as going to the beach and the zoo, and celebrating his birthday each month, which they are now doing. They continue to provide on-going advice and support.  Without their help, Ed and Robyn could not have coped in the way that they have. 

Ed and Robyn have also had amazing support from the NHS, Diana Nurses and Rainbows Hospice But ACT for SMA in particular have been incredible and they would like to focus on raising money for them so they can be there for the next family that call them.