Mum is back to being mum with nurse's vital help
TEENAGE twins Catherine and Kirstie Fields have a medical condition which is so rare that it has been named after them.
The sisters, who will turn 17 in May, both have Fields Condition which is a neurodegenerative disorder.
As little girls they developed normally until they were aged four when their mum Lyn noticed Kirstie was falling a lot and appeared clumsy in her movements.
The condition of both girls deteriorated until, by the time they were aged seven, they were struggling to walk without support.
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Because the girls, who live in Bryn, Llanelli, had such a rare condition they were treated at Great Ormond Street hospital in London and their test results were sent to specialists all over Europe in search of an accurate diagnosis.
By the time they reached 11 and started at Ysgol y Strade, Catherine and Kirstie's mobility problems meant they needed electric wheelchairs to get around and the family had an extension built to move their bedroom downstairs.
In the last four years the condition has deteriorated further, when they were 12 they were part of a disabled athletics team but now they both struggle to lift their arms.
Mum Lyn has been giving the girls all their care for the past three years, everything from getting them up in the morning to washing, dressing and all other needs.
Dad Chris works full-time and helps with the girls in the evenings.
Lyn said she is finding things particularly tough now the girls are bigger and often finds herself exhausted, during the past few years she and the girls have had to spend most of their time in the house.
Lyn said: "The girls' condition is very rare and is progressive. Where they used to be able to be quite independent and get themselves dressed with some kind of help, they now have to have everything done for them.
"The last year has got even harder as the condition as changed again and I'm finding it difficult. I need help to help me help the girls."
WellChild Nurse Lynda McMahon has recently started to support the family.
WellChild — the national charity for sick children — has invested more than £150,000 in the creation of a brand new post at Hywel Dda Health Board.
Lynda's role is particularly focused on caring for teenagers who are at the difficult stage between children's and adult care.
The twins' mum said: "Lynda has quickly become a valuable friend and support to us all."
Lynda is focusing on setting up a new care package for the family. The aim is for carers to come in each day to get Catherine and Kirstie up, washed and dressed and then also offer some support in the evening.
Mum Lyn has had to stop taking the twins to their weekly hydrotherapy session at Glangwili hospital as it was too hard for her to get them out of the house on her own, but with help from the WellChild Nurse this should be possible again.
"Last November we had to stop going because I was finding it difficult to take them. It took from 8am until 1pm for the sake for them being in the pool for half an hour."
Lynda has also taken over responsibility for liaising with other health professionals and has also successfully negotiated the supply of some essential medical supplies for the family.
Mum Lyn added: "Life can sometimes be very difficult and myself and my husband have very little time for ourselves. But I am feeling really positive about the support offered by Lynda and the difference it will make.
"It means I can be a mum again and not a carer."