Tommy Fleming
Tommy has a very rare genetic condition called Wolf-Hirschhorn Syndrome. Unfortunately this means he has profound learning difficulties, complex physical disabilities and needs 24-hour care.
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He has had many battles in his life, including 30 trips by ambulance to hospital for life-threatening seizures and breathing problems. He has also had many long stays in hospital, several life-saving operations and been in Intensive Care three times.
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The reason why he is still here is because he never gives up, and the reason why he never gives up is because his parents never give up on him. Nor do the rest of his family, loved-ones or friends.
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"Tommy loves to live, not just exist. He plays, cuddles, laughs, learns, grows and, most importantly connects with and loves the people around him. He has paddled in the sea, rides horses (and rollercoasters), always joins in on the Christmas School play and – occasionally – is more than a little bit cheeky. He may be a boy with a disability, but is an inspiration to all who know him.
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Unfortunately, though, his challenges are growing. He will have corrective spinal surgery soon and constantly needs to have his epilepsy and breathing medication adapted to manage his seizures and chest infections. An increasing amount of his care support is also being unfairly cut. His parents have recently spent two years battling to keep his transport to school running, are currently fighting a 60% cut in his physiotherapy and dealing with a 75% cut in family respite.
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Tommy’s parents think he is the bravest and most resilient boy they have ever known. Many dedicated nurses, doctors, surgeons, teachers and carers that have been part of his life think the same. His disability does not define him, but our support for him defines us. Tommy has so much more to give." -
Written by Tommy’s parents, Niall and Sarah Fleming, 2019.
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The Tommy Fleming Appeal, launched by Grand Union Lodge in 2018, has raised £10,000. This money has been used to provide equipment, Physiotherapy treatment following his surgery and recently Consultancy fees to enable Tommy to be granted a place at the PACE Centre, Aylesbury which will commence in September 2022.
Support for Tommy continues through fund raising events sponsored by Nightingale Lodge of Mark Masons and Grand Union Lodge.
Tommy has been fed through a tube to his stomach since birth and the main issue has been blockage of the tube when food is not finely liquidised. In that case the tube needs to be removed, cleaned and re-inserted.
At the request of his Parents some of the money raised through our Tommy Fleming appeal has been used to purchase a ‘super‘ blender which is now being used.
"Nightingale Mark Masons and Grand Union Lodge members, Just wanted to say thanks for the funds to pay for the blender. Tommy started his new diet today with a banana and soya yoghurt and so far so good. It’s an amazing machine and the consistency of the blended food was perfect. We will be trying it on other foods as we go but it is but it is a professional grade so should have no problems at all!" - Sarah, Tommy’s Mother.
