Catherine and Kirstie
Teenage twins Catherine and Kirstie Fields have a medical condition which is so rare that it has been named after them.
The sisters from Llanelli, aged 18, 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. Sadly, the condition of both girls deteriorated until, by the time they were aged seven, they were struggling to walk without support.
Because the girls’ 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 high school 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 girls’ condition has deteriorated further, at the age of 12 they were part of a disabled athletics team excelling at throwing events but now they both struggle to lift their arms.
Mum Lyn has been giving the girls all their care for the past three years, this involves 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 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.
WellChild Nurse Lynda McMahon has recently started to support the family at this difficult time. 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 says that Lynda has quickly become a valuable friend and support to them all. She is focusing on setting up a new care package for the family which will make a huge difference. 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 is hopeful that she may be able to get the girls out of the house more as well. She has had to stop taking them to their weekly hydrotherapy session 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.
Lynda has also made a difference to the family in taking 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 said: "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 WellChild Nurse Lynda and the difference it will make.