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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A BIG shout out to everyone involved in helping to raise funds towards The Maddi Foundation at the Christmas Fair 🎄 in La Finca Spain. 🇪🇸🇪🇸Great community spirit and thank you so much to all the suppliers who kindly donated to help our charity. They raised way over 2000 euros. 👏👏💖 ... See MoreSee Less

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A big THANK YOU to everyone who went on the shopping trip to Bicester on Friday, a fun day was had and an amazing £774 was raised for Save Our Maddi Appeal , our Ongar lady Nicola Ilett did a brilliant job along with the rest of the team, well done to all X💞 ... See MoreSee Less

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Last few places remaining , this Friday , a day out shopping to Bicester £25pp return coach trip , tuck shop on board the coach to get you in the festive spirit ! Let us know if you'd like to join x ... See MoreSee Less

Christmas Shopping Trip

November 10, 2017, 9:30am - November 10, 2017, 8:00pm

After last years very successful shopping day Ongar ladies are pleased to be putting on another christmas shopping day, this year we are raising money for 'Save our Maddi appeal' Maddi was diagonsed with an extremely rare disease called SPG15 which is classed as motor neuron disease but it is very rare, in fact it appears that no one else in the uk has this and thought to be less than 20 people in the world with this disease type, Maddi is 16.....money is needed to help toward research in order to help maddi, your support is very much needed Save Our Maddi Appea l#fundraising #shopping Bicester Village Tickets £25pp

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We are now more than half way there at reaching our goal to cover research for Gene Therapy for SPG15. This can allow us to have more hope for a successful treatment for Maddi and others with this horrendous disease.
**IMMEDIATE TREATMENT IS URGENT **
As Maddi is showing progression it is very distressing to watch her suffering these symptoms. She is only 16 so it is very sad to watch, look at her lovely smile I can not bare to see it disappear..
I AM ASKING YOU ALL TO HELP US REACH OUR GOAL FOR TREATMENT. 🙏🏻🙏🏻🙏🏻Thank you all so so much for all your kind words and help. Keeping sharing our page to raise awareness for Maddi.
Take a look at our link below to see how much we have raised so far 💪🏼https://www.gofundme.com/saveourmaddi
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**Update**
The reason for the scan today is that it has been noticed that Maddi is progressing with this disease so a fast track MRI was needed.
Praying nothing has changed too much for her. Emotionally this has been really tough for all of us but especially Maddi who I can now see is suffering inside. How can we just accept a progressive illness without trying to do something to delay it?
I am still regularly contacting more specialists all over the world, hoping there will be one that can offer us some hope for right now. Although this is a type of Motor Neuron Disease, research is also showing that it may well have other metabolic issues, resulting from defects in the lysosomal function. Lysosomes are sacs of enzymes within cells that digest large molecules and pass the fragments on to other parts of the cell for recycling. So complicated I know!
We didn't choose this path but we are certainly going to keep fighting along the way and hope for a miracle one day for Maddi.. Thank you for following our journey and supporting us. PLEASE share to raise awareness . 💞💜💞 #saveourmaddi #raredisease. #donate #fundraise
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Thank You Joe Roscoe for your help with Save Our Maddi. You are a very talented young man and good luck with your tour Please read and share Joes post 💞xx ... See MoreSee Less

Yesterday, I had a bit of a reality check. Sometimes, i think i focus so much on my music that i forget how lucky i am just to be living and enjoying a healthy life. I had the opportunity to play for these special girls. Maddi (Right), is suffering with a very rare disease known as SPG15. At the age of 13 she is already struggling to walk, as the disease is gradually disabling her legs. Her Friend, Emily (Left) broke my heart when she came to ask me if i could help in some sort of way. I could see the determination in her eyes to save her friend and i just pictured myself in the same situation. Emily, you're doing such a wonderful thing and i have so much respect for you. We had a discussion about it and i've decided to include this in my tour. I will raise as much as i can throughout the tour to donate to Maddi, to help her get the treatment she needs. Although, i will have this bucket with me and will be collecting donations on the way, you can also find out more about all of this, and even donate online at : www.saveourmaddi.co.uk

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✨Only a few tickets left now for the Christmas Shopping trip to Bicester Village. Money being raised is going to Save Our Maddi. ✨
Tickets £25 pp

Christmas Shopping Trip
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Christmas Shopping Trip

November 10, 2017, 9:30am - November 10, 2017, 8:00pm

After last years very successful shopping day Ongar ladies are pleased to be putting on another christmas shopping day, this year we are raising money for 'Save our Maddi appeal' Maddi was diagonsed with an extremely rare disease called SPG15 which is classed as motor neuron disease but it is very rare, in fact it appears that no one else in the uk has this and thought to be less than 20 people in the world with this disease type, Maddi is 16.....money is needed to help toward research in order to help maddi, your support is very much needed Save Our Maddi Appea l#fundraising #shopping Bicester Village Tickets £25pp

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