Save our Maddi

There are only 20 people in the world who suffer from the same condition as Maddi Thurgood.The 15 year-old from Ongar in Essex has a rare disease which is gradually paralysing her limbs and attacking her brain. She has only just been diagnosed so her family are now desperately trying to raise money to fund new research in America. Luke Hanrahan reports:

Posted by ITV London on Saturday, 20 May 2017

A few months ago Maddi was diagnosed with an extremely rare disease called SPG15 otherwise known as Spastic Paraplegia Gene 15. Unknown to us Maddi had been harbouring this condition until she reached 13 years old, at this point she started to struggle with walking.

SPG15 is classified as a motor neuron disease but it is very rare in fact at present it appears there is no one else in the UK with this and it is thought to be a possibility of less than 20 people in the world with this disease type. It is known to develop paralysis in all four limbs and also causing abnormalities in the brain. In addition if affects the peripheral nervous system impairing vision and hearing, it can also bring on early juvenile Parkinsonism. At present there is no cure!!

It is progressive autosomal recessive disease which means that both parents have passed on a mutation to the ZFYVE26 gene causing Spastic Paraplegia type 15.

The disease is taking hold and gradually disabling her legs as it progresses. We do not know the speed nor when and where it will end. We need to act quickly so we can stop destroying Maddis capabilities.

Save our Maddi is a non profit organisation which was started in 2016. The family have been searching across the globe to find some form of treatment and refuse to give up hope. The purpose of this organisation is to research and find a cure or treatment for SPG15. At present we have been given some hope for the future as Sheffield University of Neurosciences (SITRAN) have offered to research Maddis disease to hopefully produce a gene therapy strategy. This is great news for us, however we have to financial support this research program for a cure as Maddi is solely the only SPG15 patient in the U.K. at present.

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Every penny counts. Your generosity will fund vital research and treatment efforts in the hope of not only stopping progression of SPG15 but also finding a cure. This will open the doors hopefully to help other similar orphan diseases.
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Thank you Chelsea Football Club for inviting Maddi to the match last night. She had an amazing time and it was a brilliant game 4-0 ⚽️⚽️⚽️⚽️ ... See MoreSee Less

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I have decided to post this today about Maddi who is suffering from this rare complicated form of MND called Spastic Paraplegia Type 15 (SPG15). This disorder is characterised by progressive muscle stiffness (spasticity) and the development of paralysis in all four limbs (paraplegia) aswell as additional features which includes abnormalities of the brain, vision impairment, Parkinsonism, it affects the peripheral nervous system too.

Time is so precious while we wait for an urgent cure for this devastating life limiting disease, we need to keep Maddi as strong as she can be while she is facing disease progression and save what we can of Maddi.

We have had the absolute pleasure of teaming up with our lovely Rachel Turner aswell as Rick Waters and Mitchell Arnold Waters from Prohydr8 to use their Athos suit. Athos training system is a technology used by athletes in the US, so with the help of the suit they are able to provide live feedback of neuromuscular activity using emg sensors in the compression garments.

The aim in these sessions is to use the live view to see if Maddis muscles are firing then use it as a visual cue to help Rachel and Rick to facilitate the neuromuscular connection.
Rachel Turner Fitness
Prohydr8
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Last week we had the absolute pleasure of teaming up with Rachel Louise Turner and her client Maddi to use our Athos suits. With the help of the Athos suits we are able to provide live feedback of neuromuscular activity using emg sensors in our variety of compression garments. The aim of these sessions is to help Maddi increase her neuromuscular activity by providing visual aid to assist the process. This was just the first session with Rachel and Maddi and we look forward to seeing the improvements. To read more about Maddis Story please visit www.facebook.com/TheMaddiFoundation/

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Come and join us for an amazing evening on the 9th March at Down Hall County Hotel. Tickets are £80 it includes a 3 course meal, a live and silent auction with entertainment from BGT. 💖 🍸🍹Find our more downhall.co.uk/offers_and_events/maddi-foundation-ball/ ... See MoreSee Less

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Save Our Maddi Appeal shared Vicki Michelle's post. ... See MoreSee Less

It’s a packed programme today for Vicki on her radio show with guests singer and actress Patti Boulaye OBE, talking about her forthcoming tour in Billie and Me and the Thurgood Family talking about their work with The Maddi Foundation. Vicki will Also be joined in the studio by actress, stand up comedian and daughter Louise so stand by for a lot of laughs! Phoenix FM from 2pm.

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Looking forward to speaking with Vicki Michelle tomorrow at Phoenix FM Phoenix FM to discuss our ongoing research for a cure for SPG15. Catch us at 2pm 💞 ... See MoreSee Less

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Thank you to Bradley Lowery's family in offering to help Maddi along on her journey to a cure for SPG15. What an incredible legacy ❤️❤️
www.justgiving.com/campaigns/charity/thebradleyloweryfoundation/maddiethurgood
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Meet the children we are helping.

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