In 2016 Evie was diagnosed with a rare metabolic bone disease called Hypophosphatasia (HPP). This was spotted after a series of unexplained injuries by the Birmingham Children's Hospital. Following her diagnosis, Evie has received care from the world experts in this disease, who we are incredibly lucky to have at BCH. Many other families with this condition travel from all over the country. She is supported by a team of physiotherapists, occupational therapists, psychologists and endocrinologists. She has been looked after by A&E staff as well as orthopaedic and dental surgeons, all within the same hospital, which has provided a familiarity and comfort to us all, through the past 2 years, an enabled a multi-disciplinary approach to her care.
Evie decided she wanted to raise some money to thank the hospital and help offer other kids with HPP some support in way that she has looked after. When we found out about the HPP, Evie was loving learning to be a Circus performer at CircusMASH and was determined that the bone disease would not stop her from doing this. Thankfully, CircusMASH agreed and have encouraged her enormously to face some fears and develop her talent. Aside from the amazing skills Evie has learned, the guys at CircusMASH have helped Evie realise that she can do whatever she puts her mind to, face her fears, increase her confidence and not let the HPP stand in her way.
When Evie said that she wanted to raise some money for BCH she knew it should be something Circusy so we spoke to CircusMASH who were wonderful and full of support and ideas. So...
on December 14, 15, 16th Evie will perform a special act as part of CircusMASH's end of year show. She will develop and rehearse this act for the next three months (there will be regular updates here and on the CircusMASH website for you to see!). CircusMASH have very generously offered to donate £1 from every adult and 50p from every youth ticket sold to go in Evie's fundraising pot. You can find out more about Project Evie and buy tickets for the show here at www.circusmash.co.uk/projectevie/ , you can watch the video about the project here: https://www.youtube.com/watch?time_continue=4&v=Rhn0H7JnG-0 if you fancy, you could donate to JustGiving, which would motivate Evie through the training and rehearsals, but most importantly, go into the pot of money BCH has to help kids like Evie with rare bone diseases.