Local mother shares story for National CP Day

Unlike important conversations around Scoliosis and Spina Bifida, Cerebral Palsy has been historically overlooked, according to the Cerebral Palsy Foundation, who aim to change that this week, as part of National CP Day (March 25).

Mullingar mother Jean Smyth shared the experiences of her family in dealing with Cerebral Palsy.

Jean realised something wasn’t right when her twin son William wasn’t reaching typical developmental milestones, and she questioned whether it was CP when William was 2, but a paediatrician disagreed. It took until William was 3 and a half to receive an official cerebral palsy diagnosis.

As Jean began to navigate William’s care, she described her research process as like doing a doctorate at night. The internet allowed her to connect with families elsewhere facing similar challenges. She found a child in Australia with the same gait pattern as William, linked in with a European forum, and eventually discovered a UK family who had pursued surgical intervention.

When William was four, the family self-funded surgery in the United States to stop over-firing to the brain. Two years later, they returned for SPSL surgery to eliminate contractors and allow William to sit with extended legs. The interventions proved transformative. The day after surgery, William said his legs felt lighter.

The decision to seek treatment abroad came after being told in Ireland that William’s case wasn’t severe enough for intervention. They were advised to return home and be grateful that his condition was relatively mild.

William attends school alongside his twin brother. Their small school offers excellent support, including a special needs assistant in the classroom. On a daily basis, he functions well; he is capable of riding a bike and walking independently, though swimming has become William’s true passion. He began swim therapy at age four following his first surgery, working with a specialist who travels to Ireland from Lanzarote. The family have also visited Lanzarote for intensive swim therapy, where William mastered the butterfly stroke. Today, he participates in his local swimming club.

Jean found essential support through Lily Collison’s book and the Cerebral Palsy Foundation, who foundation helped alleviate her sense of isolation, particularly since cerebral palsy manifests differently in each child. She stresses the importance of connecting with other parents.

Jean said: "We had to figure out a road map on how to care for William and how we go about finding out what services we needed. The internet was a great help – we were able contact parents all around the world for advice."

Even though it can be a "huge financial burden and a big stress factor", Jean said everyone should "hold on to your dreams for your children".