Save Our Maddi

Maddi was diagnosed in 2016 with an extremely rare disease called SPG15 (Spastic Paraplegia Gene 15). It’s a severely life limiting type of MND. She is 16. 💞

[Save Our Maddi @saveourmaddi]

This is absolutely brilliant to see and give us hope for the future

[Dr Lila Landowski @rockatscientist]

Here you can see two neurons sensing one another and connecting in a petri dish.

There are 86 billion neurons in the #brain, and they use these webbed hand like structures (“growth cones”) to search for and connect to other neurons or body parts as we develop
@AcademicChatter

[Save Our Maddi @saveourmaddi]

Click here to support Saving Maddi - CureSPG15 organized by Carina Thurgood https://t.co/mZlqXGLsCm @gofundme

[The Mirror @DailyMirror]

Today's front page: World Cup hero Sir Geoff Hurst pledges to donate brain for research after dementia tragedy for 1966 team mates
https://t.co/JCeIU5PxXT

[Save Our Maddi @saveourmaddi]

Today is Rare Disease Day!

Maddi is Rare. No 1 in the U.K, to have SPG15. A cruel disease but we will never stop advocating and raising awareness. We may have to do things differently than most and it may take us longer.

#ShareYourRare #RareDisease #RareDiseaseDay #Saturday

[Save Our Maddi @saveourmaddi]

@AmericanAir 21257640 with British Airways your partner American Airlines treated us so bad on our flight back with my disabled daughter with motor neurone disease after her surgery, your staff lied to us and showed disrespect to our situation.

[Save Our Maddi @saveourmaddi]

@British_Airways @TeamGB @ParalympicsGB Shame on @British_Airways & @AmericanAir Fundraised for my disabled daughter with @mnd to have spinal surgery in America, booked better seats for her return to be comfortable post surgery. YOU messed up & downgraded us. NOW you deny this, so no refund!!

[Save Our Maddi @saveourmaddi]

Shame on @British_Airways and @AmericanAir Maddi had serious spinal surgery in Oct in America, we booked better seats for Maddi’s return to be comfortable after surgery. THEY messed up and downgraded us. NOW they deny they did this, so no refund. Shameful!!

[Save Our Maddi @saveourmaddi]

Thank you to The i Paper today for following and publishing our story today to support #Savingmaddi #curespg15 . And helping us raise awareness and sharing to the world 💕 @BradleyWalsh @GMB

[The i Paper @theipaper]

Mother in a race against time to help daughter with a rare condition that will leave her unable to see, hear, walk or swallow https://t.co/cJfzitpBCT

[Save Our Maddi @saveourmaddi]

PLEASE take a look at our new campaign and see how much we have raised and how far we need to go for a possible treatment. #rare #raredisease #help #donate #cure https://t.co/8sTyzQEWQA @gofundme

[Save Our Maddi @saveourmaddi]

Our presentation video at The Maddi Ball 2019. ⁦@vickimichelle⁩ ⁦@ChelseaFC⁩ ⁦@MaddiFoundation⁩ ⁦@downhall01⁩ ⁦@LovelightEnts⁩ https://t.co/qPX5p2YkL1

[Save Our Maddi @saveourmaddi]

This would help so much to add you as our sponsor at our Charity Ball next week, fundraising for a new cure soon for children with rare diseases.

[Save Our Maddi @saveourmaddi]

Shame on @AmericanAir & @British_Airways for downgrading from premium to economy, a young girl who had serious spinal surgery in the USA. Family saved up to pay for her travel to be comfortable after surgery. Both companies are inefficient blaming each other!

[Save Our Maddi @saveourmaddi]

#Day10 Maddi has been feeling a bit better...Physio was good and her range of movement has improved since having the SDR surgery trying to take baby steps 🙌

#sdr #tspark #SLCH #raredisease #essexgirl #fundraiser #spg15 #london #thankful #maddi #essex

[Save Our Maddi @saveourmaddi]

@Bradleysfight Happy 18th birthday Sean you are a superstar 🎉xx

[Save Our Maddi @saveourmaddi]

❤️❤️

[Bradley Lowery Foundation @Bradleysfight]

Meet Maddi @saveourmaddi

Maddi has a SPG15 and is the only person in the Uk with this disease. We are helping Maddi and her family fund raise for treatments to hopefully slow down the affects of SPG15.

[Save Our Maddi @saveourmaddi]

https://t.co/OyAlcYgbsV

[Save Our Maddi @saveourmaddi]

Tickets now on Sale for THE AUTUMN BALL 9th Nov a special event for @MaddiFoundation @saveourmaddi at @downhall01 Essex. A night dressed in best for a great evening with entertainment, live auction & our lovely host @vickimichelle message 4 tickets @LovelightEnts @AndyWilsher

[Save Our Maddi @saveourmaddi]

Our recent #itvnews #interview discussing #spg15 and a mother’s mission to cure a child and raise funds for life changing surgery to help Maddi keep walking #SDR Donate to https://t.co/vLDQVPlnmK

[Save Our Maddi @saveourmaddi]

❤️ @Bradleysfight @ChelseaFC @rarediseaseuk @bradleywalsh

[BBC East @BBCLookEast]

Essex teen's £300k bid for rare disorder operation in US https://t.co/uYdENQ3ODp