Children's Hospice Week 2020: This Is...Our Story

To recognise Children’s Hospice Week (22nd-28th June) we want to share some stories about how Charlie House helps and supports local families, now and in the future.

The Charlie House vision began with our Chair, Tracy Johnstone. This is her story:

“Twelve years ago my son Louis and his twin sister, Eva, were born extremely prematurely at 24 weeks. Our darling Eva was very poorly and passed away the day following the twins’ birth.

“We spent much of his first year juggling caring for Louis whilst he was in and out of hospital and looking after our eldest son Ellis. The first couple of years were particularly difficult, we spent a lot of time in hospital with Louis and when we did get him home we were just overwhelmed with the realization of what we had to do for this small and precious bundle with very complicated needs – he came home with a variety of medications, a feeding tube, oxygen and had pulled himself through several major operations.

“We were told we needed respite and support but unfortunately, due to the complexity of Louis’ needs, there was nothing available locally – we tried everywhere!

“We didn’t want anyone else to feel that there was no support available locally once they had taken their precious bundle home so we started to look into developing a charity to support families like ours – the seed for Charlie House was planted.”

Charlie House was established in 2011 to support children with complex disabilities and life-limiting conditions, and their families.

We organise fully-accessible, inclusive activities families can take part in together – from trampolining and circus skills to baking and cinema days – as well as dedicated activities for parents and siblings. We support families from birth or diagnosis, help them transition home from hospital, and give them practical and emotional support. We also give families the opportunity to take a short break to Kielder Forest Park in Northumberland during the school holidays for an activity holiday which includes accessible archery, canoeing and a climbing wall.

The families we support can feel isolated because of the complex nature of their child’s condition and they may find it difficult to find activities they can do together. These families are even more isolated as a result of the COVID-19 lockdown with many of them already having been shielding for months with no return to normality in sight.

We are doing our best to support these families during these very challenging times by arranging virtual activities including Sensory Saturdays. relaxation sessions, sensory storytelling, scavenger hunts, brownie making kits, football training and foundation training for parents. We are providing support online and over the phone, and delivering goody bags of sensory toys and relaxation aids for parents. Throughout the lockdown our Charlie House Community Nurse is continuing to work within the Royal Aberdeen Children's Hospital and int he community to provide support. 

Alongside this we are continuing to fundraise for the Charlie House Big Build Appeal to build a dedicated support and respite centre right here in the North-east.

To enable us to provide vital support to families now and in the future, we need your help to Support Our Services. Please text CHARLIESOS to 70085 to donate £5 (texts cost £5 + one standard network message). 

Motivated to make a larger donation? Click here to donate and remember to tell us in the comments if you would like to support our Big Build Appeal. 

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