Miracle for Maddi

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Miracle for Maddi

Maddi is fighting a rare form of MND. Please support our journey to a cure. Donate today 🙏🙏 Things changed for her when she started to struggle with walking.

Maddi was diagnosed with an extremely rare disease called SPG15 (Spastic Paraplegia Gene 15) which unknown to us she had been harbouring this condition until she reached 13 years old. SPG15 is a type of motor neuron disease but is very rare in fact it appears that there is no one else in the UK this and it is thought to be less than 100 people in the world with this disease type. It is known to de

velop paralysis in all four limbs, also causing abnormalities of the brain. In addition it affects the peripheral nervous system impairing vision and hearing, it can also bring on early juvenile Parkinsonism. 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 it from destroying Maddis capabilities. THE JOURNEY SO FAR....

Just before Maddis 15th birthday 2016 our world was shattered after having been called into Great Ormond Street Hospital (without Maddi) to be told the devasting news that she may have Krabbe a life threateningly disease. We were told that Maddi was the only teenager in the UK to have this. Very little was known of this condition so we began researching and found a doctor at the children's hospital of Pittsburg, USA who specialised in Krabbe and thought Maddi could potentially have a bone marrow transplant to save her. A race against time was launched to raise funds to support Maddi to have this treatment in the US but further testing recommended by the US specialist discovered genetically that she had a different disease called SPG15 and was in fact a carrier of Krabbe. We returned home to then go through the same process of being told SPG15 is extremely rare and Maddi is the only UK patient. There is very little known about the condition, we sought out more medical opinions to help Maddi and travelled to National Institute Of Health in Washington, University Of Michigan Hospital and Montreal Neurological Institute Hospital. Although they were researching some forms of Spastic Paraplegia, to date no cure has been found. We were told gene therapy may be our best option but vigorous research has to be done. So far with our continued fund-raising we have managed to support UK scientists to work on a Gene Therapy for Maddi's disease. Fingers crossed that this is our way forward to cure Maddi. For more upto date information, please read our posts ��

04/05/2026

Hi everyone 😊

We’re excited to share that early bird tickets are now on sale this Bank Holiday weekend for our Celebrity Charity Football Match at Billericay Football Club ⚽

📅 11th July
📍 Billericay Football Club
💛 In support of Maddi

It’s going to be a brilliant day for the community with some familiar faces on the pitch 👀

🎟 Early bird tickets are limited and at a discounted price once they’re gone, they’re gone

If you’d like to come along and support, the ticket link is in the comments below 👇

Thank you so much for your support 💛

06/01/2026

04/01/2026

A huge thank you to Cliff Parisi for taking part in our challenge 💪🐾

Lifting weights? ❌
Lifting dogs? ✅✅

If Cliff can lift his dogs, so can you! 🐶
Want to take part?
Just upload your video, tag , and use simple as that!

From Call the Midwife to EastEnders, Cliff proves you can be tough and soft at the same time 😉

Come on… let’s see those dog lifts! 🐕💛

15/12/2025

TODAY Maddi is having surgery at UCLH:
Microlaryngoscopy with bilateral vocal fold augmentation.

As this disease progresses, different symptoms appear and affect the body in new ways. In Maddi’s case, it has caused her vocal cords to become very weak. This procedure is being done to help strengthen her voice and support her breathing and swallowing.

It’s incredibly hard watching yet another part of her body be affected, but we are hopeful this will help improve her quality of life, even if only for now.

Please continue to keep Maddi in your thoughts and thank you, as always, for the love, support, and encouragement you show her, it truly means everything to our family.

Now you know why there is such urgency to keep fundraising.
This surgery is a temporary measure. What we desperately need is access to a cure, and we need it soon.

💛 -

09/10/2025

🚨 Still Urgent 🚨

This amazing day was all about helping raise funds to support the fight for a treatment for Maddi. 💕

We’re continuing to fundraise we’ve still got a way to go before we reach the total needed to fund this crucial research. Every donation takes us one step closer to hope.

🧬 One gene, one fix.
Let’s keep fighting for a gene fix for Maddi. 💪💗

This is the reason why…

👩‍🔬🐭 Today we had an exciting meeting with the scientists who are getting the ball rolling with our next steps 👣 it’s finally happening! 🙏✨

If you would like to donate, get in touch 🙏

29/09/2025

⚽🌟 What an amazing day! 🌟⚽

Our football teams were absolutely brilliant, every single player gave it their all and played with such passion and spirit.

I’m so proud of both teams for making it such a fantastic match and for giving everyone such an exciting day to remember. 💕🙌

24/09/2025

https://www.instagram.com/reel/DO_c008DDxc/?igsh=MTlidmt0cW14YTUwZw==

22/09/2025

19/09/2025

Scottish music sensation Lewis Capaldi helped completely change the life of one of his fans just hours before he took to the stage in London for a sold-out concert

17/09/2025

Lewis Capaldi met Maddi yesterday, he took the time to chat with her, and even made a big donation to her cause.. an incredible moment of support. 🫶🏻

EXCLUSIVE: Lewis Capaldi stunned fans at his sold-out O2 gig after stopping to chat with a young superfan outside – before donating a whopping amount to her life-changing fundraiser

Address

London

Telephone

+447557105306

Website

http://www.gofundme.com/f/SavingMaddi, https://bit.ly/4umglki

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