Patient view

Our community healthcare worker has been the family's lifeline

When Alison Knox's daughter was diagnosed with the rare Dravet Syndrome, community children’s healthcare worker Marie Stewart provided unwaivering support.

My family's community children’s healthcare worker Marie Stewart has helped my family and I through some difficult times.

My daughter Rachel was diagnosed with epilepsy at 6 months old. By the age of 2 she was having between 20 and 30 seizures a day.

Marie, a healthcare worker with the children’s community nursing team that covers Newry Mourne and Banbridge areas in Northern Ireland, was introduced to us to offer support.

From the start I felt completely comfortable with her. Her many years of experience showed, and she immediately formed a connection with Rachel, who by this time had been diagnosed with global developmental delay and autistic spectrum disorder.

Family support

When Rachel was having a bad day, Marie was able to encourage some interaction from her and make her smile by singing to her. 

We have had many hospital admissions, and Marie would often come to the hospital to spend time with Rachel, which allowed me to get home to spend time with my other children.

Even when Marie’s assigned hours were finished, if she had no other calls to make, she would regularly stay on and help.

Rachel was eventually diagnosed with Dravet Syndrome, which is also known as Severe Myoclonic Epilepsy of Infancy (SMEI), a rare and catastrophic form of intractable epilepsy that begins in infancy.

Difficult time

Rachel was the first child diagnosed with this condition in Northern Ireland, and it was a difficult time. But Marie was there for us, giving comfort, support and encouragement throughout.
 
Marie has been Rachel’s healthcare worker for nearly 10 years now. Although Rachel can't speak, when Marie arrives she responds with excitement and interacts with her, wanting nobody else but her nurse.
 
Marie’s work is not just a job – it’s an absolute lifeline for families of children with disabilities. To us, Marie is an extension of our family, and loved and appreciated by us all.

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