What a week! Those of you who know me or follow this blog will be familiar with my grandchildren Tommy and LJ. These two are ordinary, loving, often mischievous children who bring joy to so many.
As you can see, Tommy has a limb difference and is ‘differently abled’. It was a shock when we found this out at Katie’s 12 week scan – my son and daughter – in – law are amazing – here is Adam’s account of that time. I’ve added a few photos and links but the words are my son’s.
During early pregnancy myself and my wife were given the devastating news that a complication had occurred and our baby was going to born missing a limb.
I’ll never forget the day we were sat having a normal baby scan, looking forward to seeing our beautiful baby again. The lovely chatty nurse paused and went quiet. I instinctively just thought she was just concentrating trying to find a better angle or whatever. The silence continued and she began to look concerned. She said quietly “I’ll just be a minute, I have to go got a colleague”. My heart sank, I tried to reassure my panicking wife that everything was ok…I knew it wasn’t. Another more senior looking nurse came in, she looked concerned, they talked quietly and the she left. The nurse turned to us and nervously said “I’m very sorry something is wrong with your baby.
That moment I’ve never felt pain quite like it, I didn’t know what to think, they explained that our baby we had tried for so long to have was going to be born disabled and missing a limb and could have potentially more problems.
Still crying and shook up we were ushered into a cramped little room, walking past the waiting room full of expectant parents who didn’t know where to look….i just wanted to run away.
We were given a basic black and white pamphlet of a generic limb difference which to be honest didn’t help one bit, it was dry and clinical. We were also given the option/possibility of abortion.
We left feeling numb and confused.
Well the rest is history, we went along with the pregnancy, and we are blessed with incredible courageous son, Tommy.
We were helped by other fantastic charities and people such as the NEVER SAY NEVER FOUNDATION who helped Tommy attend a limb difference pirate camp, the work those guys do is simply unbelievable
and Greg & Tori Lynch who built Tommy’s first ‘Buzz Arm’ and introduced me to prosthetics.
We’d also like to thank to Lucky Fin Project for all of their amazing work in promoting positive images of limb different children.
We have thought tirelessly of a way as parents we can help not only limb difference children but also parents and expected parents so along came the idea of the limbBo Foundation.
I invested in a budget 3D printer initially and then a more advance one and tirelessly taught myself how to use it.
I was able to create a prosthetic with the help of The amazing TEAM UNLIMBITED, I was incredibly proud, was my first step at helping him adapt.
The first step will be to design and create heartfelt, considerate, informative, non judgmental, useful leaflets plastered with photos of superb kids like Tommy and how they’ve overcome adversity, made friends and living a happy life….that’s what we needed, a hug and it’s going to be ok, not medical journal. We will aim to get a professional product that can be mass printed and positioned in hospitals throughout the UK.
Going forward we want to bring limb difference kids together in this country, have regular meet-ups, adventure days, and trips away. This will also give parents a chance to share their stories and adversity’s together.
Finally we hope to research, design and create new electronic aids and prosthetics to help limb difference kids do tasks that are at the moment not possible for children missing upper limbs (using a knife and fork simultaneously for example) and make day to day life just a little bit easier.
The charity is still in the creation stage and with the help of friends we hope to fully register with the charity commission by the end of the year as soon as we have completed their criteria.
Yesterday BBC Look North and Radio Leeds came to interview us and film Tommy – two incredibly patient and kind ‘Misters’ as Tommy called them.
There is so much happening at the moment it’s a roller coaster – website (still under construction), facebook page Just Giving page Discussions about writing a children’s book – illustrated by a local school, so many things we want to do. I hope you can follow our journey and please get in touch if you can help in any way or more importantly if we can help you.
Friday saw an article in the Barnsley Chronicle
Saturday the Daily Mirror