20 May 2025

Summer-Louise’s story: crazy, fun, funny and feral

Summer-Louise O’Hare was a normal, energetic two-year-old, described by her mum Leighanne Richardson as ‘crazy, fun, funny and feral!’. She loved charging around on her bike, splashing in puddles in her wellies and watching Peppa Pig and dinosaur films.  But at the start of 2022, Leighanne and Summer-Louise’s father Ashley O’Hare started to notice some changes. 

“It was at the end of January when we first saw a pin prick rash with red dots at the back of her throat and bruises on her legs,” said Leighanne, 30, who lives in Morpeth, Northumberland also shares daughters Brooke, 10, and Millie, six months with Ashley. “We took her to the GP who thought it was a blood infection and they sent us straight to Northumbria Specialist Emergency Care Hospital in Cramlington for a blood test.” 

After several hours in the hospital the family were told doctors thought Summer-Louise had leukaemia.  

“I felt like our world had been torn apart and I was so scared of what was to come for our little girl. We didn’t know how we could cope with it. Would she live, or die? All we wanted to do was help and protect her but it was totally out of our control.” 

Summer-Louise was immediately sent to the Royal Victoria Infirmary in Newcastle for more blood tests and a bone marrow biopsy. On February 11th it was confirmed she acute myeloid leukaemia (AML) with the FLT3 gene.  

The toddler started chemotherapy on a combination of the chemotherapy drugs Cytarabine, Daunorubicin, Fludarabine and Idarubicin. She was given four rounds over the course of several months and responded well with few side effects.  

“She did really well although she was tired and had hives on her skin. But she was still up and running around, playing and singing and getting her dad to chase her. Her hair started to fall out and we had put what was left of it into a bobble on the top of her head. One of the nurses nicknamed her Pebbles, from the Flintstones, because of the hairstyle and also her huge personality. 

“What helped us through this hardest journey was our hospital family – other parents going through the same thing with their children took us under their wings. They were and always will be a big part of what we went through.”  

With covid restrictions still in place, Leighanne moved into the hospital with Summer-Louise. Ashley was working as a chef and managed to keep his job going while sharing care of Brooke with her two sets of grandparents.  

Doctors told them Summer-Louise would need a bone marrow transplant to increase her chances of survival. A donation of stem cells was found from umbilical cord blood sourced in Germany and on July 6th 2022 Summer-Louise was given her bone marrow transplant.  

The side effects of the transplant proved to be severe in the two-year-old. She suffered from Graft vs Host disease (GVHD) which affected her digestive system, lungs and limbs and gave her painful mucositis in her mouth. Tragically it caused such severe scarring in her lungs that her parents were told she had been left with the lung capacity of an 80-year-old lifelong smoker and she would always need to be on oxygen.  

For a period of time Summer-Louise rallied. But eventually the little girl’s condition started to go downhill. Her gut started failing, she developed liver disease and bronchitis, on February 12th 2023 she passed away with her parents, sister, family and friends by her side. Summer-Louise, who was just three years old by that time, had spent a year and a day of her short life in hospital.  

“At her funeral everyone wore wellies in honour of her, and we gave out little wristbands with her birth date on and the date she passed away. What Summer-Louise had was so rare. We had never heard of AML. She fought so hard and so well. She was the entertainment on the ward singing ‘Let it go’ from the film Frozen and chucking pens up I the air like it was snowing. So brave, smiling, tackling it day by day but eventually she couldn’t fight any longer. 

“We are still in touch with many of the other parents. Having Millie has helped us, and we have a Facebook group in memory of Summer-Louise. Now we want to do all we can to continue to support other parents going through this nightmare experience.”