Caring for the whole family

Esme is a smiling, happy, bubbly nine-year-old, who is full of life and well known for the beautiful bows she wears in her hair. Her personality draws people in. She takes everything in her stride, regardless of whatever’s thrown her way.

At just six months, Esme was diagnosed with a rare genetic disorder called Aicardi-Goutieres syndrome (AGS), a condition which has no cure.

Mum, Jenna, explains: “Esme still can’t sit up, walk, or do the things I would love for her to do like go out to play, invite her friends round, or do things we take for granted every day. But we’ve accepted that.  She is who she is, and we’d rather enjoy the time we have with her than spend it worrying.”

When Esme spends time at Acorns, it gives Jenna and her family time together that might otherwise be missed, which is particularly important for Esme’s brothers and sisters.

“At Acorns we know Esme’s going to receive the same level of care that we would give her at home.  They have such a close place in our hearts and are like a second family to us. I couldn’t imagine our lives without them now.  The staff put on lots of activities for the children and plan their whole day around fun, care, and creating memories to last a lifetime. These memories are something that as a family we will hold on to forever.”

And through Acorns’ dedicated Sibling Service, Esme’s brothers and sisters can be around other children and professionals who understand what they are going through.

“Whatever dark days are coming and whatever the future holds, Acorns are going to be there to support me and my whole family. Until then, they help us enjoy every moment of the time we have with Esme.”

Acorns has cared for over 700 children like Esme in the past year, and supported 940 families, including those who have been bereaved – your support through Childlife is helping this to continue.