A BIG shout out to everyone involved in helping to raise funds towards The Maddi Foundation at the Christmas Fair ๐ŸŽ„ in La Finca Spain. ๐Ÿ‡ช๐Ÿ‡ธ๐Ÿ‡ช๐Ÿ‡ธGreat community spirit and thank you so much to all the suppliers who kindly donated to help our charity. They raised way over 2000 euros. ๐Ÿ‘๐Ÿ‘๐Ÿ’– ... 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 ยฃ774 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 X๐Ÿ’ž ... See MoreSee Less

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Last few places remaining , this Friday , a day out shopping to Bicester ยฃ25pp 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 ยฃ25pp

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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. ๐Ÿ™๐Ÿป๐Ÿ™๐Ÿป๐Ÿ™๐ŸปThank 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 ๐Ÿ’ช๐Ÿผhttps://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 . ๐Ÿ’ž๐Ÿ’œ๐Ÿ’ž #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 ๐Ÿ’žxx ... 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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โœจOnly a few tickets left now for the Christmas Shopping trip to Bicester Village. Money being raised is going to Save Our Maddi. โœจ
Tickets ยฃ25 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 ยฃ25pp

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