Tag Archives: Limbo Foundation

Growing up

Children don’t come with a manual. All children are unique and have their own strengths and areas where they need encouragement. We love them, we protect them and hopefully they thrive. We then have to give them the skills to cope on their own. My Tommy D is four next month and starts school in September. I’m heartbroken, he’s my Tommy, he’s too little, he’s too young … and breathe grandma! We’ve given him confidence, he’s been surrounded by love and now it’s almost time for him to be in situations where we can’t protect him from stares and occasional cruel or unthinking words.

We’ve been stressing the positives. We talk about his little arm and always have done but I think he now understands that he is ‘different’. Yesterday he said ‘LJ hasn’t got a little arm she’s got 2 big arms’.

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On one of his school visits a child asked what was wrong with his arm and his parent replied ‘he’s poorly’ – we don’t want him to think he’s ill or not normal so we stress how he can do anything but he has to find his own way to do it. My friend Nina (@musicmind) talks about #tommydcan and he really can, he’s inspirational. I think maybe we have overdone the positivity as on meeting new friends at the playground yesterday his opening gambit was ‘I’m Tommy, you want to see my little arm? Shall we build a tunnel’  Long may his confidence last.

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Nursery told us last week that when filling his water bottle another child had gone over to Tommy to do it for him. Tommy explained that ‘I can do it myself, I can use my little arm look’ I love his ‘can do’ attitude (just as well as he know we won’t do things for him that we know he is capable of doing himself)

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I’m heartened greatly by the young people I meet and those who have chosen to support LimbBo foundation (@lbofoundation) – Darton GCSE Art students who illustrated our book, the pupils at St Catherine’s in Sheffield where the student council are looking at our book and working out how to share it, Pupils at Hoyland Common primary who were amazed at the videos of Tommy and working out how his 3D printed arm works. Students at Flamborough Primary who have chosen LimbBo foundation as their Summer project. We want to spread the word that it’s OK to ask, that Tommy is ‘differently abled’ rather than ‘disabled’

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He is the most loving child and as his grandma (mamma) I’m incredibly proud of him and his little sister who I think will be lost when he starts school.

Until them remember #iftommycan then so can you 🙂

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Tommy’s story – the book

The LimbBo foundation continues to develop. 3D printed arms, a planned day out in August and a growing number of people following us and supporting us. 1 - 4

Our book is now in print!! Huge thanks to the year 10 GCSE group at Darton and my friend Amie, their teacher, for their illustrations, Photobox for agreeing to a bulk deal and various people who are ‘testing’ these out in schools.

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I took Tommy into Darton to deliver their copies and for 10 minutes we experienced what fame must feel like. Tommy’s photo has been literally plastered around school for weeks and so as we walked down the corridor (lunchtime – major error on my part!) pupils from all years ‘high fived’ Tommy or just shouted ‘Hiya Tommy’ – he was as bemused as I was but it was wonderful. We went into the Art room where Tommy was greeted with ‘his’ display – ‘Look Mamma it’s me’ – what a day – priceless. If we have done nothing else we have educated pupils here that Difference is OK and something to be embraced.

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The book is for sale on our website and hopefully we can get this into as many schools and nurseries as possible.

When we started this charity we had no idea how much support we would gain – friends, family, colleagues and people who were strangers a few weeks ago.

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A special warmth for me is that my son (who started the charity with his wife) was a pupil at the school where I taught so many of the people helping us are his friends, people I taught years ago – good to see the #Kingstonespirit lives on.

We have a lot of work to do but these are exciting times – if you want to follow us we are on Twitter, Instagram and Facebook too.

Jane x

 

FINALLY …

Tommy can use a camera by himself. For a couple of years I’ve been campaigning -aka ‘banging on’ and moaning about the fact that there is no such thing as a left handed camera.  (You will find several blog posts on here 🙂 ) None of the major camera companies could help – they suggested remote releases or apps …and whilst I know these work Tommy is 3 and wants to run around and snap what he sees not set up a studio type shot.

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My son (obviously fed up of my moaning ) decided to sort it out for Tommy. With help and advice from friends, a 3D printer, lots of patience and a determination that #Tommycan take photos – the ‘LimbBo Cam buddy’ was created.

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Tommy can hold it easily in his left hand and still press the shutter – he literally squealed when he used it in a cafe and saw what he’d taken. So much so that people came to talk to us and ask what he was using.

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We can now have mama and Tommy camera sessions and he’s so proud of his shots. If you know any child who would benefit from this please contact https://www.limbbofoundation.co.uk/ and we can point you to the design which Adam has made ‘Open source’  . If you don’t have a 3D printer but have a child with a limb difference that would benefit then please get in touch.

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Just goes to show there ‘is always another way’ (@ITLWorldwide) and we can celebrate what #Tommycan do 

Limbbo Foundation launch

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.

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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.

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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

Making friends at Pirate Camp Florida
Making friends at Pirate Camp Florida

 and Greg & Tori Lynch who built Tommy’s first ‘Buzz Arm’ and introduced me to prosthetics.

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We’d also like to thank to Lucky Fin Project for all of their amazing work in promoting positive images of limb different children.

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Huxley, Tommy and Kobi at a Lucky Fin meet up

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.

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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. download

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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.

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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.

There is a link here to the BBC article and here for the video clip

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Friday saw an article in the Barnsley Chronicle

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Saturday the Daily Mirror

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Jane x