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Toni-Louise Worthington

Toni-Louise Worthington is crowdfunding

98%
£17,770
raised of £18,000 target by 365 supporters

Weʼre raising £18,000 to fund a walking machine to give Oliver the best chance to walk :) Additional funds will pay for maintenance & private physio (£90 per hour) x

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Story

My Neuro Hero

This is Oliver, our cheeky loving two year old who loves Hey Duggee and trampolines. He also happens to be a medical miracle, a Neuro Hero, surpassing all expectations with one huge desire…

THE WISH TO WALK

Unfortunately, just before Christmas, Oliver was diagnosed with an unbelievably rare life limiting condition known as Pontocerebellar Hypoplasia (PCH). PCH is a neurodegenerative disorder characterised by progressive atrophy (wasting away) of various parts of the brain. He has the rarest type also referred to as Encephalopathy Fatal Infantile. Children with this condition are born very poorly and pass away shortly after birth. Those that continue to live, do not exceed infancy. Not only this, but the condition is of a mitochondrial nature which means in some cells, Oliver’s batteries will not last as long as everyone else’s :( . Oliver’s condition is so rare that there are under 10 cases reported worldwide to date. There is no treatment or cure for PCH hence why it is life limiting. What makes Oliver even more unique is they have never seen it present like it has in Oliver so he is literally one in many million, if not billion!

The part of the brain that has been affected in Oliver means his body has to manually learn how to do everything many, many times before he can do it. He suffers from hypertonia (stiff leg and hip muscles) and low truncal tone (weak stomach muscles) making mobility difficult. Oliver needs daily physio to help improve these muscles which is often painful. He needs round the clock care as he cannot talk, sit, walk or feed himself. He is not able to play like other children and as a result misses out. He is also prone to aspirational pneumonia and has nocturnal epilepsy putting him at risk of Sudden Unexplained Death in Epilepsy (SUDEP) meaning we have to take turns to monitor him through the night. Due to his lack of mobility, Oliver is at high risk of hip migration, hip dislocation and subsequently hip surgery in the near future if he doesn’t begin to walk.

Given all of this, Oliver is currently exceeding all expectations and is doing ok!!! He does not have a lot of the symptoms of PCH, is otherwise very healthy and is slowly but surely progressing!! Only one part of his brain is currently affected and there have been no signs of any degeneration here. Whilst Oliver is very developmentally delayed, he is showing signs HE DESPERATELY WANTS TO WALK!!!

This is where the Innowalk comes in. The Innowalk is an amazing piece of equipment that effectively makes a child walk, a bit like a cross trainer except the machine does it all for you! It fully supports the posture of children with physical disabilities and allows them to maintain an upright position, develop their mobility and give them a sense of independence. For Oliver, it would help decrease the stiffness in his legs and hips (and therefore reduce pain and the need for medication), improve his core muscles and head control and build up his strength to be able to sit independently. It will also give him the best chance at walking and reduce the need for hip surgery in the future. See Oliver in action in one here!!: https://www.youtube.com/channel/UCk8_oOGUAMPWiawo_yR3aoA or search My Neuro Hero

Sadly this nor anything similar is available on the NHS. We can purchase one privately but it costs £16,000. As much as we would love to buy him one, having myself given up work to care for Oliver we are not in a financial position to do so.

A lot of people have said to me “wow, £16,000 is a LOT of money”. Yes it is! However, when you see how hard your child works and how much they struggle on a daily basis, just to do the basic things us able bodied individuals take for granted, when you know how much this could improve their life,YOU DO WHATEVER IT TAKES. And this page is just the start with plans for fund raising events to follow!

Our little boy is a trooper, a real life Neuro Hero! His life has consisted of chronic pain, operations, investigations, admissions, therapies, daily physio, daily speech and language therapy, countless medications and seizures. He constantly struggles with his brain trying to tell his body to do or to move quickly enough. And yet he does it all laughing or with a smile on his face! Every time he comes back fighting, stronger than before.

We have no prognosis for Oliver, we do not know what the future holds for him. But we want to invest our energy into giving Oliver everything we can, every opportunity we can, whilst we can :) . He is a beautiful little boy inside and out and deserves the world. At the end of the day, no matter how complicated his condition, his life, his future is, it boils down to one simple thing.

“He is just a little boy who wants to walk”.

Just like all children, he desperately wants to play and have adventures.

Any donation, no matter how small would mean the world to us. We thank you for taking the time to read Oliver’s story and in advance for any contribution you make.

From the bottom of our hearts, Toni-Louise, Steve and our Neuro Hero, Oliver

x X x

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Updates

9

  • Toni-Louise Worthington2 years ago
    Toni-Louise Worthington

    Toni-Louise Worthington

    2 years ago

    Hi everyone, Bit of an update!! We're still continuing to raise awareness of the wonderful machine that is the Innowalk!!! More people need to know how amazing and life changing this piece of equipment can be!! And to mark the amazing achievement everyone has made getting Oliver his own Innowalk, our boy has only gone bloody NATIONAL!! ☺️ Not only that but it's a double page EXCLUSIVE!! And it's on Page 9, beating Conor McGregor!!! Eek!! 😱🌟👊💪😂 https://www.dailystar.co.uk/news/latest-news/little-lad-one-billion-condition-18998610

    Update from the Page owner

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  • Toni-Louise Worthington2 years ago
    Toni-Louise Worthington

    Toni-Louise Worthington

    2 years ago

    IT'S ARRIVED!!!! 😯😊👣 To everyone who helped us fund raise, this is what you've helped us to achieve...Oliver now has his VERY OWN INNOWALK! It will help him to avoid hip surgery and hopefully one day walk!! ALL BECAUSE OF YOU!! 💙 You have changed the life of a little boy who has been through so much, what you have done will impact his life forever!! There are no words to express how unbelievably grateful we are, we will never forget what you have all done for us, you are all AMAZING! Love Toni-Louise, Steve & our Neuro Hero, Oliver xXx

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  • Toni-Louise Worthington2 years ago
    Toni-Louise Worthington

    Toni-Louise Worthington

    2 years ago

    Unfortunately there aren't enough characters in an update section to put all our information in one! Just to clarify, although we have increased the target for additional funds for maintenance and physio (because it has been sent out in several media publications) we do not expect anyone who has already donated to further donate! We are immensely grateful for all your contributions, this is just to allow space for any additional individuals to contribute should they wish to do so. You have all done so so much for us, bless you all xXx

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2 years ago

Toni-Louise Worthington started crowdfunding

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Page last updated on: 1/3/2021 04.31

Supporters

365

  • Anonymous

    Anonymous

    Jan 3, 2021

    £5.00

  • Anonymous

    Anonymous

    Dec 6, 2020

    Lovely wee guy

    £10.00

  • roger yelling

    roger yelling

    Nov 8, 2020

    our best wishes to Oliver and the family

    £20.00

  • Sarah Lock

    Sarah Lock

    Oct 28, 2020

    Best wishes x

    £5.00

  • Sandra

    Sandra

    Jul 12, 2020

    £20.00

  • Leon W

    Leon W

    Mar 22, 2020

    Best wishes Toni, Steve and Oliver! Xx

    £40.00

  • James (Lifetime)

    James (Lifetime)

    Jan 23, 2020

    Heres the fundraising amount for the amazing Ollie, Lifetime Training did a rowing challenge and bake sale and raised an amazing amount! From all at Lifetime Training, Uncle James and family xxxxx

    £840.00

Toni-Louise Worthington

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About the fundraiser
Toni-Louise Worthington

Toni-Louise Worthington

Bristol

Oliver's mum :)

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