Talulah

800 530 Susie

Talulah was born a happy, healthy little girl, but as she got older the family noticed that she wasn’t meeting expected developmental milestones. Doctors initially thought it was global developmental delay, but the family knew deep down that something wasn’t right. They spent the next five years trying to establish a more accurate diagnosis, pursuing genetic testing at Great Ormond Street Hospital (GOSH) where a blood test confirmed that Talulah had a rare genetic disorder called Wiedemann-Steiner Syndrome (WSS), which affects physical, intellectual and emotional development.

Mum Rebecca said, “Although it wasn’t nice to hear the diagnosis, we had already been living with the effects for a while, so it was finally good to have some answers and be able to start to think ahead.”

Lots of appointments to check various things such as her heart, teeth and hormones followed leading to the discovery of hip dysplasia in both hips. Over three years Talulah underwent five operations to replace and fix her displaced hips and it was during this time that the family were introduced to Spread a Smile.

“Talulah spent a lot of time in hospital, in pain, recovering from her operations, using a wheelchair and learning to walk again. It was during the pandemic and so we found ourselves stuck in hospital, with no access to playrooms and not able to see the rest of the family. This is when we started having virtual Zoom sessions with one of the Spread a Smile fairies and they completely changed the surgery experience for Talulah, bringing so much excitement and happiness. We would count down the hours until each session and it was always a light at the end of a horrible day.

“Part of Talulah’s disorder means she has horrendous anxiety and the sessions with Spread a Smile’s entertainers really helped to relieve this when she was feeling anxious. We could jump on a call for some singing, drawing or storytelling and it was a lifeline, helping to calm her down and bringing so much joy.”

Another symptom associated with WSS is increased hair growth, with Talulah’s hair growing at a considerable rate. “We’d spent a lot of time on the wards at GOSH meeting other children, some with cancer who had lost their hair during treatment. We met one little girl who was only four years old and had to have her tongue removed but she was so happy and helped to encourage Talulah to get out of bed after one of her hip operations to move around and dance with her Zimmer frame. After that we decided we wanted to do what we could to help other children going through such awful things and as Talulah’s hair grows so long so quickly, we started to cut it every year and donate it be made into wigs for children who had lost their hair to cancer.”

Talulah has been cutting her hair for since was four years old (she is now 11) and in both 2023 and 2024, Talulah and her family have also used the annual hair cutting to raise vital funds to support Spread a Smile and also help fund the making of the wigs, raising nearly £12,000 to date to support both Spread a Smile and the Little Princess Trust.

“We are so grateful for everything Spread a Smile has done for us. It’s been so wonderful to have zoom sessions to look forward to and to meet all of the amazing Spread a Smile entertainers who have not only helped and entertained Talulah but her siblings as well. We have built wonderful relationships with them all which has helped with Talulah’s anxiety and bring our family together when she was recovering at home for some very special moments. Spread a Smile provided us with a joyous, happy and a safe place and hearing my three kids giggle together was one of the best things.

“Sometimes when you’re in the midst of hospital life and treatment you don’t have the energy to laugh or smile as you’re so focussed on supporting your child and keeping them well and happy. Being with Spread a Smile was always such a relief. They gave us time to stop, sit down and breath, knowing that our child was entertained, happy and looked after. Seeing her laugh meant the world to me.  

“We have been through some horrible times and a lot of pain and trauma and Spread a Smile have been a bridge between those awful experience and now. Talulah is in good health and looking forward to starting a new school in September, but we will never forget the impact that the wonderful team at Spread a Smile has had for us.”

Talulah wrote the following message to us, “To Spread a Smile – best charity ever, Thanks for always helping me in hospital. You always make me feel very happy and smiley and also you cheer me up when I’m in hospital and you also cheer everyone up. When I was bored in hospital you made me excited and some days when I wasn’t at school I just jumped in the Zoom calls with Kiri. Love Talulah.”