Ivy is our gorgeous soon to be 18-year-old girl. She has a genetic condition called Mitochondria Cytopathy which has sadly caused severe global delay. 

She was such a weak poorly baby, but we have watched her grow strong and develop in her own time and way into such a beautiful happy young lady. She has this incredible power to engage people and make them laugh and interact with her.

Ivy attends a special school where staff are trained to look after all her care needs and set activities that give her the opportunity to learn and express herself in her own individual way.

She lives for her music and jamming sessions, loves sensory time, swimming and above all, spending time with her friends. Every day is filled with activities and adventures that she is thrown into and her determination to make sure she is involved makes me realise that she has a real love for life.

Recently, Ivy has joined in the teenage activity sessions run by The Challenging Behaviour Foundation ‘What Matters to Me’ project and Demelza Children’s Hospice. These tailored sessions look at how children with a profound and multiple learning disability can, through creative engagement, make their views known. This research could be used to influence policy at a local and national level.

Last time we met for a swim with friends, a fantastic chance to leave the wheelchair for pool games.

Images of Ivy in a swimming pool.

Dad is a keen biker and makes sure Ivy is never left out and literally drags her along! This can make her a little anxious as it’s a totally different experience of being out and about and going fast but she soon relaxes. Ivy is unable to communicate verbally so it’s amazing to see her different reactions to things and her ability to express her emotions.

Ivy's dad on a bike outside, with Ivy in a wheelchair attached to the back

Through everything that Ivy deals with, including the relentless hospital visits, operations and day-to-day challenges, she is such a happy girl with a wicked sense of humour and infectious giggle. She just can’t help herself by laughing when people count, it’s just one big joke every single time! But she does burst out laughing when she hears a baby cry which will get her into trouble one day...