We are delighted to share this incredible story, written by Bodmin teenager Rosie Morris, about her experience as a young carer for her little sister, who lives with a rare genetic disorder.
By Rosie Morris
A young carer is someone under the age of 18 who helps care for a family member, relative or friend who due to disability, illness, a mental health problem or an addiction, cannot cope without support.
Older young carers are also known as young adult carers, and they may have different support needs to younger carers. Young carers have significant caring responsibility. In 2011 it was identified that there are 177,918 young carers in England and Wales. One in eight of those were under the age of eight.
A young carer may help with practical tasks, physical care and emotional support. For example: cooking, housework, helping someone out of bed, taking medicine and talking to someone who may be distressed. Carers Trust helps young carers to cope with their caring role through specialised services delivered by its network of local carer organisations across the UK. They offer a variety of activities such as: breaks, peer and community support, training in subjects such as health and safety, wellbeing and life skills, whole family support and emotional support.
I am a young carer for my younger sister Penny who has a rare genetic disorder. Penny is diagnosed with Trichothiodystrophy (TTD) which is only seen in one in a million, and Cockayne Syndrome (CS) which is only seen in two in a million. Penny is so rare she has TTD with CS overlap. It affects her ability walk and talk. It causes feeding problems, issues with vision, hearing, an extreme intolerance to uv rays, a dangerously low immune system and bone density problems. These children also suffer with Cachectic dwarfism and premature ageing. Despite the challenges they face, children with TTD/CS have very loving and happy personalities.
Being a young carer is challenging and can be draining, but there are positives too. Being a young carer has given me so many skills regular children/young adults don’t often encounter, such as Makaton sign language and paediatric first aid. It has also given me empathy and confidence to help and support others with special needs.
Everyone is different regardless of their disabilities or abilities. No one should be treated as different. Everyone is equal.