We are so excited to share the tremendous achievement of our own Mark Fitzpatrick of Dublin, Ireland.  Through Mark’s unwavering efforts over nearly three years, he has secured the right to much needed medical care for thousands of Irish children with disabilities.  Thanks to Mark, no new parents in Ireland will have to go through the stress of the medical card application process – and many potential rejections – when their world has just been turned upside down.

Father of KCNQ2 Child Moves Mountains to secure Healthcare for Children in Need

 

As the parent of a child with KCNQ2 encephalopathy, Mark understands firsthand the importance of the availability of government support for the numerous pieces of specialized equipment necessary to care for his son, Eric.  In Eric’s case, he currently has seven pieces of equipment that came through Ireland’s medical card – his special bed, pram, bath seat, hoists, stander, and hi-low chair.  These expensive pieces of equipment and other medical necessities are out of the reach of most families without the government support provided by a medical card. 

 

Instead of just fighting the battle to get a medical card for Eric, Mark set off on a journey alongside two other advocates leading the effort to get needed medical care for the nearly 10,000 disabled children in Ireland whose parents struggle to care for them at home.  He did this so that the most vulnerable in Ireland have full and free access to healthcare in their own right and in their own name, no questions asked. Due to these changes in legislation, all disabled children forever more will have free access to all medication, equipment and therapies that are available in Ireland, and their parents will be spared the heartbreak that previously came with every medical card application or review.

Mark and his group “Our Children’s Health”, gained the support of many other organizations in this effort – The Special Needs Parents Association, The Jack and Jill Children’s Foundation, Down Syndrome Ireland, The Saoirse Foundation, The Irish Children’s Arthritis Network and The Genetic and Rare Diseases Organisation – all working together.   However, Mark spent much of his own time campaigning himself, standing outside of the government offices morning after morning, meeting with legislators and collecting signatures to bring about this important change. 

 

 

As the Minister for State Finian McGrath said in response to the passage of the bill; “I’m delighted that this is one less battle that parents and families of children with a disability will have to face. This previous medical card omission added to a constant struggle for families and caused further hardship and hurt.”

 Inspired by the fight Eric and his KCNQ2 friends fight every day, Mark moved mountains and we couldn’t be more proud!

 You can read the full bill here

You can read the press release from Minister Harris & Minister McGrath: