Ebonie was first diagnosed in February of 2016 at just 4 years old with the very rare Philadelphia Chromosome Acute Lymphocytic Leukaemia. After an extremely courageous 3 and a half years of intensive chemotherapy treatments, a bone marrow transplant and CAR-T therapy, Ebonie sadly passed away on the 2nd of July 2019 aged 8. Here her mum Christine tells her brave story and how Momentum Children's Charity supported Ebonie through that time and continues to offer support for the whole family today.
“We first came across Momentum Children’s Charity after Ebonie had become very poorly with her first chemotherapy treatment. The treatment was high dose and very strong, so within 3 months she had no energy, couldn’t walk and had bad mouth sores. We were admitted into the Marsden for a 9 week stretch and Kerrie became our Family Support Worker. Whilst it was odd having a stranger come into our lives at that point, because Kerrie had experience of her own, we knew we were talking to someone who understood because they’d been there themselves. She was so lovely from the start, just there if we needed her with no pressure and always thinking of Ebonie’s brother and sisters too, often bringing them something when she came to visit.”
“I remember one time after a horrendous few nights in the hospital, Kerrie came over to me and asked if I would like a massage with Shirley Anne, Momentum’s Massage Therapist. Kerrie sat and kept Ebonie company whilst I got some much-needed time out – a lovely half hour of peace, calm and a really great massage”
“For Ebonie, Momentum were able to give her incredibly special moments throughout her long hospital stays with visits from Sleeping Beauty who came and read to her at East Surrey Hospital and Ana from Frozen who was a VIP guest at Ebonie’s 8th birthday at the Marsden – it made her so happy.”
It is clear that the Musselwhite family are an incredibly close one with Ronnie, Ebonie’s younger brother donating his bone marrow to Ebonie when he was 4 years old and her sister Willow helping her through an incredibly challenging period of rehabilitation when she developed chemo-induced encephalopathy. Momentum Children’s Charity offered support which enabled the family to have precious time together – from funding a bunk bed for Willow and Ebonie’s bedroom to memorable family trips down the Thames on Momentum’s river boat, and then organising a professional family photo shoot to create some lasting memories before Ebonie passed away.
Since Ebonie died the family have been taking each day at a time
“The kids are doing ok; Ronnie has been doing music therapy sessions which Kerrie organised for him – he’s loved them and it’s really helped him to process his emotions. All of the children have been offered access to their bereavement therapist and we’re also hoping to get away as a family to one of Momentum’s holiday cabins too – it’s great to know we can get in touch when the time is right and get some respite and time away together.”
“If there’s anything Ebonie has taught us, it’s that you keep going. You stay strong. I still speak to Kerrie regularly and know that she and Momentum Echoes (Momentum’s bereavement support service) is there if I want to reach out. It’s still early days for us but knowing that support is there if we need it is what it’s all about.”