To help Evie and her parents, some of her good friends are completing the ‘Three Peaks Challenge’ not only to make life just a little bit easier for Evie as she goes through the challenges of growing up but to help raise awareness of her condition.

Evie has a rare genetic condition known as Duplicate 3q24.q29 mosaicism syndrome. 3 other children/adults are known with similar variants of 3q but out of all of the 5 children, Evie is the oldest, so as you can imagine very little is known about this syndrome and it affects each child very differently.

Having this condition, for Evie, means frequent medical appointments, heart defects, poor eyesight, fatigue, poor muscle tone, flat feet, incontinence issues, constipation, anxiety, developmental delay and she is very susceptible to infections. Evie is delayed in all areas of her development and is currently functioning at the same level as a 2.5-year-old meaning she is 50% behind her chronicle age.

Evie struggles on a day to day basis with even the most basic tasks and needs constant help and support through the day and night. She is unsteady on her feet and uses a wheelchair for parts of the day due to hypotonia and fatigue which causes her to tire quickly. Evie still has difficulties with sleeping through the night. She has a tendency to choke on her food and has no sense of danger, so cannot be left unsupervised at any point. Evie has no spatial awareness and cannot read people or situations, so can get too close and hands-on physically with people even when they don’t want her near them or to touch them. Evie gets anxious over things people take for granted and will fixate on these things for hours or even days causing her to constantly repeat herself, be inconsolable and not be able to think of anything else apart from what’s caused her anxiety.

Evie is a special little girl and we feel like the luckiest people in the world to have her in our lives. Despite all the difficulties Evie faces, she always wakes with a beautiful smile on her face, she can light up a room upon entering and has a habit of making people adore her. She is the most caring little girl we know and is always on hand to comfort her friends when they are sad. She has a fantastic sense of humour and an absolutely brilliant personality.

Evie has taught us all so much compassion and taught us to take a step back and appreciate the small things in life….Evie truly is 1 in a million.

The team of around 20 novice walkers will be talking on the challenge of climbing Snowdon, in Wales (1085m), Scafell Pike, in England (978m) and Ben Nevis, in Scotland (1345m) on the 1st of July 2019. We thank you in advance for any support you can offer to our cause and any penny you can spare will go a long way to making Evie’s life a little more comfortable as she faces even bigger mountains each day of her life!