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In August 2016, Tilly, was diagnosed with SMA Type 1 at just 8 weeks old. At the time, none of us had heard of this cruel disease, even though it is the leading genetic cause of death in babies. SMA is a rare life limiting neuromuscular condition. It affects sitting, crawling and walking, arm, hand, head and neck movement, breathing and swallowing. Type 1 is the most severe form of the disease and doctors offered little hope that Tilly would survive beyond the age of two.
In December 2016, a new drug called Spinraza was approved to help fight SMA. Although, sadly, it is not a cure, it is helping Tilly and in June 2018 she turned two, a huge milestone. However, she will need a lot of help and medical intervention throughout her life and this all comes at a cost. Therefore, Team Tilly, are raising money to support Tilly in the future.
Since Tilly's diagnosis, Team Tilly have undertaken various challenges, including, The Thames Path Challenge, Keech Hospice Bubble Rush, Santa 10km, The London Superhero Run, The British 10km, Cycling around the Isle of Wight and tea and cake mornings. They have raised money for Great Ormond Street, Keech Hospice and SMA Support UK, all charities that support Tilly and her family. Now, we plan to take part in the Chiltern 50 on 29th September 2018. This involves walking 50km from Henley on Thames to Princes Risborough.
Please support us on our challenge and donate to help Team Tilly provide for Tilly's future. She is the bravest little girl, who, despite everything she goes through, is always smiling and brings joy to all her family and friends, especially her amazing parents, Emily and Rob, and her big brother, Charlie. She is an inspiration to us all and we are all so incredibly proud of her.
Please help us to help Tilly.
Thank you in advance for all your support and generosity. It means more than we can ever say.
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- 3 days ago
Laura Healy3 days ago
On Saturday, Team Tilly completed a 20km training walk! Thank you for all your support so far! Xx
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Laura Healy started crowdfunding
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Aug 12, 2018
Aug 11, 2018
Well done to all of the team very proud of you all! Good luck!
Aug 5, 2018
Wishing you and all the family lots of luck in raising funds to help little Tilly. Alison xx
Aug 2, 2018
Jenn, Those boots are made for walking....Good luck xlx
Aug 2, 2018
Aug 2, 2018
Well done xx
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About the fundraiser
Team Tilly has many members - all people who love Tilly and are so incredibly proud of her determination and fighting spirit. Team Tilly includes: Emily Unthank, Rob Unthank, Pearl Peters, Bill Peters, Laura Healy, Ray Healy, Steve Smith and Jennifer Tatman.
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