Carly, a bereaved Mum, has shared her devastating story of losing her daughter Effie in a new short film that launched last week.
The film is aimed at families caring for and grieving the loss of their seriously ill child and has been created by Together for Short Lives, the UK charity for seriously ill children and families. The film was produced to celebrate their one-year anniversary in 2020.
It’s hoped the film will help the charity reach out to the growing number of families caring for a seriously ill child to get the help they need and won’t feel so isolated and alone. Over the last 20 years, the number of children with life-limiting conditions has more than doubled, so there is a pressing demand for help and support.
In the film, Mum Carly talks of her ‘textbook pregnancy’ and how there was no indication that there would be anything wrong with their much-longed-for daughter.
“When Effie was two and a half, her dad Paul was giving her a bath, and she just fell forward. He caught her before she hit the water. It was like she blanked out for just a second. That was our very first sign that something was going wrong for Effie.”
Following three more episodes, Carly describes the tests and investigations that soon followed before a neurologist gave them the devastating diagnosis of Batten disease – a fatal and degenerative disease.
Like many families, they were sent home to come to terms with this life-altering diagnosis completely alone and isolated. With only an information leaflet and all their fears of what the future would hold for their little girl.
“We knew at that point that Effie would soon be taken from us.”
The family contacted Together for Short Lives for advice, support, and someone to talk to following Effie’s shocking diagnosis.
“We thought we were on our own, but that’s when Together for Short Lives said: ‘You are not alone.'”
Effie soon lost her ability to eat and breathe, but through Together for Short Lives’ helpline, the family were able to seek out extra support for Effie via their local children’s hospice to make coming to terms with her complex illness more manageable.
Speaking of losing Effie, Mum Carly said:
“It was unavoidable, we knew it was coming. We just had to make sure we planned in advance to make it the best end for Effie. It’s what she deserved. I resuscitated for 12 minutes before the ambulance got there. The longest 12 minutes of my life.”
Today, more than 99,000 babies, children and young people are living in the UK with health conditions that mean they will have short lives. Together for Short Lives wants to reach every family in need of lifeline support, with dedicated support services tailored to their needs and a friendly voice at the end of the phone.
Lizzie Chambers, Director of Programmes, said:
“We hope Carly’s story will help us to reach more families just like Carly’s, who are looking for support but don’t know where to turn. Calls to our helpline have doubled over the last year as the pandemic has compounded an already very difficult life of caring for a child with complex care needs. Life has never been harder for these families, and we want to reach as many of them as possible so that they too know they are not alone.”
Sue, Mum to Simone, who died in January 2021, has been supported by Together for Short Lives throughout her daughter’s life:
“My daughter Simone passed away when she was 22 years old. Together for Short Lives were there with me throughout the whole journey. Their helpline has helped me on many occasions. When I needed legal support, they put me in touch with their free legal support service. When I was worried about my daughter transitioning to adult services, they sent me invaluable resources to put my mind at ease. They recently helped me access money via a response fund to pay off debts from my daughter’s funeral. I will always be grateful.”
Together for Short Lives supports families like Effie’s and Simone’s through:
- The charity’s helpline and live chat service
- Online support services including Together for Short Lives’ Facebook Support Group
- Regular online Virtual Cuppas and family support Zoom meetings where families can chat about what’s on their mind with other parents who know how they are feeling
- Voices for Families: Free expert legal advice when it matters
- Free regular informative webinars for those caring for a child with a serious illness.