Bethany’s story: “My whole life is taking care of her”
This is Bethany’s story, told by her mum Charlotte…
12 year old Bethany has been diagnosed with FOXG1, a rare neurological and developmental disorder. She has also been diagnosed with microcephaly, epilepsy, hypotonia and cannot walk or sit unaided. Bethany requires 24/7 care.
Charlotte has worked as an SEN teaching assistant for over 20 years and suspected something wasn’t right early on. “Growing up, Bethany was not meeting her milestones. When we finally got the diagnosis, it was almost a relief. But we were so aware that we had a long road ahead to get the support Bethany and our family needed.”
Despite her diagnosis, Bethany loves to laugh and is happiest when surrounded by people and noise. “She loves Karolina Protsenko, the violinist. Her favourite toys are ones that make noises. Her dad made her one on a piece of wood with animal puppets glued on top of springy doorstops.”
Life at home for the family is always busy. Days are filled with getting Bethany washed, dressed and ready for the day, administering her medications and sorting her feeding tube, keeping her entertained and comfortable. “Bethany completely relies on us for all her needs. But she will communicate with us through sounds and gestures to tell us how she feels.”
The family have been supported by their local children’s hospice, Derian House, for several years. “Derian House Hospice has been amazing and we are very lucky to have their support. Bethany is able to access respite stays every few months. We also make use of their cinema, hydrotherapy pool and park as a family.”
Bethany’s family have also been able to access support from the community nursing team, and a small care package from their local council. The care package has allowed the family to receive valuable support from a Personal Assistant, who helps with Bethany’s day-to-day life. “Our PA is amazing. She takes Bethany out in the day and supports me with Bethany’s care when at home.”
But their care package allowance isn’t enough to cover Bethany’s full-time care: Charlotte and her husband have to provide the majority of her care.
It’s like having a newborn and at times it can be really tough.
“Sometimes, when I am on my own, I have to ask Bethany’s younger brothers to help. I know siblings like to help but I hate to ask.”
As parent-carers, it’s not just time that Charlotte and her husband devote to caring for Bethany: the emotional and physical impact of caring for Bethany is always at the front of Charlotte’s mind. “It has had a huge impact on us. My whole life is taking care of her and administering her meds. It doesn’t just stop when Bethany isn’t with us. When Bethany is away, it’s nice to have the break, but I also miss her so much.”
