Lyn Fields, mum to twins Catherine and Kirstie, is still very much involved with Tŷ Hafan, despite the fact that her daughters left the care of the hospice over five years ago.
Identical twins Catherine and Kirstie Fields are 24-year-old sisters who have beautiful smiles and a cheeky sense of humour. Like most young women their age, they love clothes, music and nights out with friends. But there is something that sets Catherine and Kirstie aside from their peers – they have a potentially life-limiting degenerative neuromuscular disease that is so rare, it’s been named after them.
Although the girls were born perfectly healthy, their physical abilities declined as they grew older, and when they were seven years old, one of the world’s leading medical experts named their condition ‘Fields’ Disease’ because the twins were the only people in the world to have it.
As the years went by, the girls deteriorated more and more, and finally, after nearly 17 years of caring single handed for her daughters, an exhausted Lyn finally admitted that she needed help, and accepted a care package arranged by her local authority. This was followed by a referral to Tŷ Hafan.
For the next two years, the family came to Tŷ Hafan for short breaks, and received much needed support at home. This was especially important when Lyn was seriously ill in hospital with double pneumonia, followed by meningitis. During this time, Tŷ Hafan staff rallied round to ensure the girls were being looked after and they also supported Chris, who had never had to care for the twins on his own before.
And now, five years on, Lyn and her family are helping out with Tŷ Hafan’s Transformers initiative. This pilot project, launched in June this year, aims to help young people and their families cope with the often daunting transition from children’s to adult’s services and care. Run by Sarah Slye, the project is developing skill-based group workshops designed around a medical and social model of care for young people and their families to help them gain knowledge and independence in planning for a variety of situations like health, education and housing.
Through this transition project, Tŷ Hafan aims to enable young people to live their lives as independently as possible, according to their wishes, whilst receiving the care and support they and their families need.
Catherine and Kirstie now receive help with their personal care at home, but Lyn knows from bitter experience how difficult it is to access all the other support they need.
“The girls went to Tŷ Hafan until just before their 19th birthday, but then we changed services from children to adults”, said Lyn.
“Since then, getting the care the girls need has been a minefield and I’ve had to fight hard for any support I can get. It’s difficult to get regular contact with the professionals who provide services unless you chase them yourself. But there are so many families and young people who don’t know where to turn for the help that is out there, nor the time and energy to fight for that help”, she said.
“That’s why we’re involved in the transitions project so we can share our experience and advice with other families that find themselves in our position and influence services that are on offer to them. We’re developing a tool kit that will provide families and the young people themselves with the right advice and resources to help them practically, financially and emotionally”.
And to celebrate the success of the transitions project, Sarah and Lyn are arranging the first ever Transformers Ball, which will be taking place at the Marriott Hotel in Cardiff on Saturday 29th September.
Lyn said: “The Ball is especially for any young person who has been supported by Tŷ Hafan, now or in the past. With a buffet, a live band and a disco, we want to make it the best night ever for these young people”.
Tickets for the Transformers Ball are £10 for the young person and a carer, and £15 for any additional tickets. The event is open to anyone over 14.
For tickets, email firstname.lastname@example.org or call Sarah Slye on 07824 692500.