Thanks for taking the time to visit my Just Giving page.

 

I am happy to announce that on the 8th of September 2012 I intend to take part in a 100 mile cycle challenge around Oxford, so as to raise money for the NDCS.

 

I’m choosing to support the NDCS quite simply because my son Ben, 4, is deaf.  He has been diagnosed with Auditory Neuropathy.  The amount of support and help we’ve received from many professionals and people that in some way would have had support from the NDCS is immeasurable, so it is a good feeling to be giving something back.

 

I’m naturally happy and proud to talk about my twin boys Ben and Daniel whenever anyone asks.  I’ve never deliberately hidden the fact that Ben is deaf, but I realised the other day that I’m unsure how many people I’ve actually talked to in detail about Ben’s deafness.

 

So, the following is Ben’s story, for you, not in any way so as to get you to part with more money, but purely so that you can get to know him better.  Now, if you’re lucky enough to meet him or other deaf or disabled children in the future you can relax with them, say hello, play with them and maybe even give them a pound or a pack of Haribo like you would any other 4 year old you meet.  Little tip – Ben “loves” Haribo!!

 

On the 1 of August 2008 the boys were born, both were seemingly healthy and everything was brilliant.  The following day quickly turned everything on its head.  Ben contracted a bowel infection, and to cut a long story short, the following month saw Ben in intensive care, being fed antibiotics and nutrient fluids only, and being transferred to Cardiff hospital by ambulance in a serious condition.  Thankfully we then saw him gradually return to health, a return to the Royal Devon and Exeter Hospital and then something resembling a feeding routine – which started by feeding him 1ml of milk every few hours.

 

After all that, Ben’s hearing tests were done and he was subsequently diagnosed with Auditory Neuropathy.  Ben has some hearing, and will respond to his name, sounds and music, but what he hears is not what most people hear.  The way I visualise it, is as if your brain has a dodgy mobile phone signal.  The ears work fine it’s the auditory nerve that is misfiring when it sends the signals to the brain.  The truth is that despite him still having a fair level of hearing, we can’t really tell what he hears.  Although it’s something that is helped with hearing aids, they don’t help anywhere near enough to think they solve the problem.  As a consequence Ben has delayed speech, and what he does say is sometimes difficult to recognise.  He is improving all the time though, through our efforts, the efforts of our support team, and the use of British Sign Language with speech.

 

It is estimated that up to 40% of the total population of deaf children have some kind of additional disability.  Ben also has a mild form of cerebral palsy which shows itself in the form of increased tone in his left leg, and some weakness in the left side of his body.  This means walking and running is more difficult for him and it requires a larger effort for him to balance and to do fine motor skills with his left hand.

 

Despite all of these challenges Ben is a happy, clever, content and cheeky little monkey, just like every other 4 year old boy in almost every way.  With the support of teaching assistants for the deaf, a school which has its own special hearing centre, and let’s not forget his brother Daniel, Ben will start mainstream Primary school precisely 2 days before I undertake this challenge.  Both Louise and I will be very proud when he does, as we know how far he’s come, and I’m not being cliché when I say it is truly inspiring.

 

It can be a daunting experience to know what to say or even how to react upon being confronted by deafness or disability.  It certainly was for Louise and I at the very beginning.  It is because of the help and support we’ve received since learning of Ben’s deafness and disability that I’ve posted his story here, so that others can learn more about it and not be so afraid of doing or saying “the wrong thing” when they meet deaf or disabled people.  That support is also the reason why I’m doing the cycle ride.  If you’re reading this as a friend, colleague or family member, please make a donation to help a cause that is obviously close to my heart.

 

A big thank you for all your donations.  Don’t forget to tick that Gift Aid box.

Cheers!
Lee