Subscribe to Whizz-Kidz NewsRowan and Thomas
Rowan and Thomas from Bristol are lively brothers, aged 9 and 5, who like playing on their computer games, watching films and looking after their three dogs.
To see the boys you would not know that they have a severe condition, but the internal damage that’s caused when they walk is irreversible. They both have a rare genetic condition called Ehlers-Danlos Syndrome Type 3 – which their mother also has. Walking creates internal bleeding and the bones in their feet are gradually crumbling away. Their feet look bruised but the boys feel no pain as their sensation is badly affected; so they simply continue to walk unaware of the damage they are causing.
Unfortunately their local NHS wheelchair service could only offer basic manual wheelchairs for the boys, but as mum is a wheelchair user too this was not practical and impossible for their Dad to take them out together. The boys needed more freedom, as they didn’t like being pushed about in their manual wheelchairs, and they couldn’t join in with their friends at playtime or go out as a family. The family realised the best solution would be if the boys had powered wheelchairs. However, the NHS would not consider them for powered equipment because they can walk – they failed to take on board the extent of internal damage being caused to the boys.
Jo, the boys’ mum, comments:
“We were shocked by how little the NHS were willing to help us and really didn’t know where to turn. As I have the same condition as the boys, life is quite difficult as we all have to rely on their father to look after us and obviously we haven’t all been able to go out as a family.”
The family applied to Whizz-Kidz for help and following an assessment we delivered two indoor/outdoor powered wheelchairs – a ’Spectra Plus’ and ‘Spectra Blitz’. The boys are delighted as they can now go where they want, when they want – giving them the chance to be as independent as their friends. The boys use their wheelchairs at school, so they can now join in at playtime, and at home where they can play with their friends in the village. It also means the family can spend time together as they can now all go out together and what they are most excited about is that they can walk their dogs too.
With such a complex medical condition the future health of the boys is not known so it’s important that they use their powered wheelchairs to reduce the risk of further damage to their feet and ligaments.
Mum adds:
“For the first time in 6 years we have been able to go on a family holiday! It’s made such a difference to our daily lives as we can now go on family outings, such as visiting the zoo, and our local park. We now have much more fun and the boys have much more energy as they don’t have as much pain on a daily basis.”
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