A huge thanks to Martin Barrick who has completed a monumental effort for Evie this year, completing 3 massive challenges despite some nasty back injuries along the way. Amazing effort from a great friend – thanks a milllion, & what a legend!!
1. The Ripon sportive 2018 (cycle ride) covering 100 miles with over 6,250 feet of climb in the Yorkshire Dales on 16th Jun 18.
2. Tough Mudder in Skipton. Half marathon with a multitude of obstacles testing all around strength, stamina and mental grit. DATE 29th July 18.
3. Manchester Half Marathon. DATE 14th Oct 18
Raising over £1000 which is a fantastic amount & what an achievement!
It’s been a while since the last proper Evie’s Everest update but Evie has continued to try her best and is making some great progress thanks to all the support from her many & growing fans!
She can now stand without support (on a good day with splints) for a good few minutes. She is yet to take her 1st independent steps but we are hopeful that in time with continued weekly physio sessions and supporting orthotics she will do so.
Evie’s weekly physio routine consists of a sports physio session, horse riding with Hannah her prior key worker from nursery, swimming, and rebound therapy. Plus Specialist orthotics consultations in London and Leeds that have helped Evie greatly too.
Communication continues to be profoundly difficult for Evie given her condition, but we are now using a combination of pictures, words, and signs to help Evie get her needs across to those around her. This takes a lot of organisation to have the right pictures to hand at the right moment when they are needed but help reduce Evie’s frustrations / challenging behaviours and help her to make choices. Private speech and language consultations funded by Evie’s Everest has helped us with this.
Evie has also just started school at parklands specialist resource unit in Seacroft and whilst she misses her nursery friends, she is settling in really well now.
She attends a couple of SEN playgroups on a weekend which help her to socialise and learn in an inclusive learning environment.
Medically, Evie has been largely in good health in recent months but was hospitalised for a week following a nasty long seizure last summer, ending up in A&E as she struggled to breathe, then was admitted following CT scan for suspected encephalitis and put on IV meds for 5 days (thankfully MRI scan proved it wasn’t) but a harrowing experience which we hope was a one off. We are still awaiting any news from the national 100,000 genome test so Evie remains without diagnosis.
In more positive family news, Evie has a new baby sister called Emily who born Sept 27th who we all love and adore (see pic). We hope Evie will learn lots from her being around and have a friend for life.
Happy half term!