Thomas’s Story.

Thomas was born 4th March 2008 at Jessop maternity hospital in Sheffield. Parents Mark and Claire were immensely proud of their new born son as were all their family and friends.

Thomas up to the age of 4 years old was just like any other little boy, happy, mischievous, always wearing a big smile and he loved to learn and play, eagerly starting school and making new friends.

Thomas age 4;

It was around this time that Thomas started to show the most minor traits of his future problems. Just small things - unsteady gait and a lack of coordination. Initially this was attributed to a form of autism.

Thomas age 7.

Now struggling with his coordination and walking. With little brother Alexander, aged 4.

As time went on his condition gradually deteriorated, with him slowly regressing further without being diagnosed with any certainty. It would be another 7 years before a positive diagnosis was made.

At the age of 11 Thomas finally was diagnosed with Battens disease. This debillitating disease is extremely rare with only approximately 120 people in the UK having it.

Claire has written many updates over the last few years, posting them on social media in an attempt to highlight this cruel disease.

Story

Thomas age 14;

During all these years, Mark, Claire and young brother Alex did their best to try to maintain a “normal“ life. However with Mark being able to only work sporadically and Claire not being able to work at all due to being a full time carer to Thomas, life stopped being “normal” and became increasingly “difficult”.

Throughout the progress of the disease and latterly, Thomas spent many weeks in hospital with repeated bouts of the lung infection Pseudomonas. Thomas finally succumbed to one such episode on Friday 18th March just 2 weeks after his 14th birthday. He died at home with his family at his side.

They have been supported by family and friends in various ways but now the loss of their child Thomas is biting deep emotionally and financially. They need as a family to attempt to move forward with their lives.

With your help we can get Mark, Claire and Alex to be a family unit again while still holding precious memories of Thomas. In an effort to support this we are endeavouring to raise funds in order for a memorial area to Thomas to be created.