Tomorrow will mark the first official World Spina Bifida and Hydrocephalus Day. I am honoured to be a Patron of this momentous global event. For over two decades I have been heavily involved in campaigning to prevent Spina Bifida and Hydrocephalus and in supporting families who have been affected by these conditions.
My interest in this issue arises not only through my role in politics but also through my own personal experience.
In 1989 I fell pregnant with my second child. I had a healthy, normal pregnancy and therefore when my son Andrew was born we were shocked to learn he had Spina Bifida and Hydrocephalus.
Spina Bifida is a birth defect caused by a fault in the development of the spinal cord within the first 28 days of pregnancy, each case differing in severity from the next.
My family and I were initially devastated by this diagnosis, and having a limited knowledge of the condition we worried about the impact on Andrew's quality of life. Would he be able to play in the park with other children? Would he be able to go to the local primary school? Would he have the opportunity to see the world?
Over the years, I learned that the answer to all these questions was yes.
Although Andrew was confined to a wheelchair it did not stop him from playing (and fighting!) with his older brother, travelling to various places across the globe with his family and eventually going to the local primary school with all his childhood friends.
Andrew never once let his disability define him.
As a child he was extremely bright, funny and mischievous. As his mother I felt it was my role to make sure he availed of every opportunity open to any other child of his age. I am proud to say that Andrew was able to do the majority of things his peers could do, even if he had to do them in a slightly different way.
There are many children who are born with Spina Bifida and Hydrocephalus who go on to lead extremely full and happy adult lives in spite of their condition. Unfortunately my own story did not end that way.
After a short illness Andrew sadly passed away in 1998. He was nine-years-old.
I feel extremely blessed and grateful to have had such a wonderful, independent, loving and outgoing son who enriched my life so immeasurably.
In Europe today it is estimated that every year there are more than 4,500 pregnancies affected by Neural Tube Defect such as Spina Bifida.
Therefore, it is vitally important that we educate women on the importance of taking folic acid. In the United Kingdom alone up to 72% of these defects could be prevented through women taking folic acid at the right time, ideally three months prior to pregnancy, and at the correct dosage.
Although women are becoming more aware of the benefits of folic acid, approximately half of all pregnancies across Europe are unplanned and therefore such pre-conceptual medical advice is rendered ineffective.
In response in part to this statistic, over 70 countries practice mandatory folic acid fortification of flour. However, to date no European country has implemented this mandatory practice of fortification. The United Kingdom, the Irish Republic and the Netherlands are currently considering doing so following recommendations by their national expert committees.
Whilst raising awareness of prevention of Spina Bifida and Hydrocephalus is a key priority, policy makers also need to take into consideration those who are currently living and ageing with Spina Bifida across the EU.
In Northern Ireland there are those with Spina Bifida and other Neural Tube Defects living into their 60s and 70s. However, in most member states appropriate policies and measures are not in place to help those who live past childhood.
We must do all in our power to ensure that adults and children across the EU suffering from Spina Bifida and Hydrocephalus, or any other form of impairment, have equal access to the correct treatment and care services.
Through my own experiences of having a child who was born with Spina Bifida, and caring for him throughout his life, I have been given a rare insight into this condition.
It is my hope that World Spina Bifida and Hydrocephalus Day will give us the opportunity to highlight all of these issues and hopefully to provide a better understanding and insight into the lives of those who are born with these conditions.
This week in Strasbourg, one of the events to mark World Spina Bifida and Hydrocephalus Day is a photography exhibition organised by the international federation for spina bifida and hydrocephalus (IF) and its member associations. I am delighted to have been able, through the EU Parliament, to host this event.
The exhibition runs until tomorrow in Strasbourg. It has been entitled Unfold their potential, (y)our return on investment. As one of the judges for the best photograph I have found the role extremely rewarding and uplifting. Seeing photographs of children with SB-H enjoying active lifestyles all over the world emphasises to anyone viewing the exhibition that these children can lead very normal lives. Behind each photo is a wonderful story. Indeed, as you look at some of the images you can see special relationships and bonds between family and friends.
Whilst this exhibition is in the European Parliament, I would be delighted if at some stage we could host a similar type of event in Northern Ireland.