My name is Carla and I’m a mother of two. When my daughter Eva was two years old, she was not making usual
progress through milestones she should be - she was a late crawler, late walker and her walking was asymmetrical.
After visits to my GP, she was referred to a neurologist at Oxford’s John Radcliffe Hospital, who diagnosed Eva with a
never-seen-before condition. Since then, I have taken part in NHS research into Eva’s condition and have decided to
become a Patient Research Ambassador.
I found out about the Patient Research Ambassador position when the Clinical Research Network in my area
contacted my geneticist to see if anyone was interested.
My daughter Eva has a very rare neurological condition - so rare that it’s never been described before in medical
literature and my husband and I have been really impressed with the research arena, which we now find ourselves in.
There are a number of professionals who are really trying to help even though we don’t really have any idea exactly
what’s going on for her. I just think it’s really important that as many people as possible know that there are a number
of professionals who work day-in day-out to try and find answers to things that we don’t medically understand yet.
I think it’s important because without it, we couldn’t have made any of the medical advances we have done in the past
and wouldn’t have the treatments we have today.
I haven’t done much yet but I would like to raise awareness of the importance of research and direct people to the fact
that this is all going on behind the scenes. When we turn up to the doctors for whatever reason, we never really think
that there has been a whole lot of research leading up to the point of being able to make a diagnosis, or creating
drugs for treatment, or any type of treatment. It’s just making people aware of that really and how important that is.
I think it’s really important. We have felt people are trying to help us. We don’t expect people to have the answers,
certainly not at the moment, because this condition’s never been seen before. The fact that she’s not just a file on a
shelf where people have said ‘never seen this, don’t know what we can do about it’, we’ve actually got people
researching her condition at the moment to find out exactly what’s going on with Eva’s brain. Hopefully, from there,
when we have some answers, we’ll be able to work out how we’re going to help her. That’s hugely helpful and
important, because we don’t feel we’ve just been left to get on with it ourselves.