The Tommy Fleming Appeal
Meet Tommy Fleming
Tommy is ten years old and 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.
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.
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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.
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Tommy Fleming update
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.
A note from Sarah, Tommy’s Mum:
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!
Thanks again xx
A note on COVID
The Consequences:
1. Thomas' spinal surgery for severe scoliosis has been delayed. It was due to happen at the end of April and we still don't have a date for it.
2. As a result of the delayed surgery, his hip has got worse too - he desperately needs an operation on this too but the spine needs to be sorted first. Thomas used to be able to side sit during a transition to kneeling in class, but he is in so much pain with his hips now that he is unable to do that.
3. Thomas' left leg is almost permanently bent now at the knee - he doesn't like straightening it as it hurts. This is as a result of not having professional physio and osteotherapy for circa 6 months... (and the hip as per above).
4. Thomas is a social little boy and missed his friends and teaching staff. He missed going in the car daily too to get to school. What I'm saying here is that he got bored of Mummy and Daddy 🙂
5. We had limited resources at home for teaching but did manage to get his standing frame and stool from school beforehand which was good.
6. Respite support was completely stopped during lockdown and we still don't have it fully back in place as yet.
7. Access to extended family is restricted even still - some are still shielding and others are high risk to Tommy.
8. Equipment servicing and reviews for items such as his home hoists and wheelchair had to be delayed.
9. We had to 'fight' to get Thomas on the extremely vulnerable list - we actually had to provide a PowerPoint presentation that included references to white papers about his condition to prove he was eligible.
10. I was furloughed and as of 1st November am unpaid - I do not know how long this will be for currently. I have had to get some temporary work now that Tommy is back at school, but this makes me quite anxious.
11. Niall had to teach from home and was anxious about going back once shielding ended.
12. The impact on our mental health throughout this has been felt as well as to our physical health
Written by Sarah Fleming