Our son Dylan has a very rare conditions called Larsons syndrome, in this little lad’s case it has affected his joint development which has led to neurological condition being also affected.
Since being born Dylan has smiled through all challenges thrown at him, he has faced more challenges in his little life than most would face in ten lifetimes.
At 14 months old he faced a lifesaving operation to reduce the pressure in his neck with spinal fusion in his neck, he was fitted with a halo, feeding tube, tracheostomy and six months in hospital from being a ”normal” baby feeding etc to this was torrential to say the least however he embraced it defied the doctors and smiled his way through it.
Three years later he fell over and broke the fusion, he walked around for 3 weeks with this break unknown to ourselves we took him to hospital to be told he had “broke his neck” he never complained of any pain and they had to carry out an emergency repair on his neck, he wasn’t happy that he had to where a collar but again learned how to walk feed himself all the things we take for granted.
We had assumed Dylan was developing in what was his normal fashion for his doctor to say she thought something was wrong and required further investigation. We were told that he had further compression and needed more life-threatening surgery, this was carried out in great Ormand street hospital, when he came back from theatre he wasn’t able to move any limb, 7 months in hospital in a brilliant rehab facility and the North East Children Hospital Dylan was able to feed himself and he learned to walk a few steps in a K-Walker, we as parents were immensely proud.
As from what you seen Dylan has endured a lot of on-going problems with his neck and this is due to him growing, now at the grand age of 13 Dylan has further problems with his neck, he is no longer able to walk and is in a electric chair, and has to be hoisted and unable to feed himself due to even further compression on the spinal cord.
We have been told there may be an option of surgery it wont correct the problem but it will hopefully reduce any further complications he may come accross as he gets older.
The funds we are needing is to pay for some of the following equipment:
a specialised bath
additional hoisting equipment.
adaptions to have a room converted into a physio room
funds towards an extension on the house aiding dylan to be upstairs at night
and private physio on regular basis with a hydro facility
We will be completing a lot of fund raising sessions to try and achieve this, however any kind donations from the public would be greatly appreciated to allow Dylan to keep smiling and face this head on.
- Yvonne Wagstaff
- David Maddison
- John Peters
- Nicola Seely
- Joanna Anderson
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