Carolynne & Freya's reality - Child care with complex needs

My name is Carolynne, and I care for my daughter Freya (15). We live in Scotland. Freya lives with severe, complex health and disabilities, so she needs round the clock care provided by nursing staff from the NHS, and myself. Freya receives Child Disability Payments which support with the additional costs for her care, including running lifesaving machines in her room. Freya’s condition means she won’t get better. 

When Freya turns 18, she will move to Adult Disability Payments and should receive the health element of Universal Credit, but the government is currently consulting on removing this for young people between the ages of 18-22. I honestly don’t know how we will afford Freya’s care if this support is cut.   

The medical equipment that we need for Freya means we have HUGE energy bills. During the energy crisis the cost was predicted to go up from £9,000 a year to £17,000. It was impossible for me to pay this as I work part time. The actor Kate Winslet heard about Freya’s condition and the high bills and started a gofundme for Freya. Many more kind people all over the world donated and it was such a relief but not everyone has this happen for them.  

Freya is happy and loves going to school, she loves being in nature. She likes to hear people enjoying themselves around her. She's lovely and she smiles all the time. She's so beautiful.  I've done everything I can to provide her with experiences over the years of her life. But when she becomes an adult, Freya will leave school. There'll be nothing for her, so she'll have to be looked after at home.