Walthamstow mother thanks the Stroke Association after her son had a stroke

A Walthamstow mother has praised the Stroke Association for their support after her twelve year old son had a stroke in 2013.

It took Lailee Paniapen, 46, over six months to find out that her son Arshaad, had had a stroke when he became seriously ill in July 2013.

Lailee said: “As a mother you just know when something isn’t right with your child, and I spent weeks watching Arshaad do normal day-to-day tasks, knowing that something just wasn’t right with him. He became really lethargic, would have moments of spacing out. I became increasingly worried that something was seriously wrong, but after numerous doctor appointments, I was told that he was fine. He then had a serious fall at school where he hit his head on a bench and since then he would fall over for no reason.

“A couple of weeks later Arshaad became really sick, he struggled to keep food and water down, and again I knew he needed help. Doctors diagnosed a sickness bug and told us that Arshaad needed lots of rest. On holiday the next month Arshaad kept falling over, and after several confusing trips to A&E in Mauritius Arshaad stayed on the Intensive Care Unit after collapsing again. I knew I needed to seek medical advice as soon as we got home to the UK.

“In December 2013, doctors confirmed that Arshaad had had a stroke. Because it had been undiagnosed for so long, it was really big and the effects were devastating. Arshaad now has weakness down the left side of his body, has issues around his memory and suffers with anxiety. Within in an instant, our lives had been changed forever.”

Lailee and Arshaad were supported by the Stroke Association’s Childhood Stroke Support Service. The charity offered support and guidance to the family, and regularly attended meetings with the family in hospital and at school.

Lailee added: “The support we received from the Stroke Association has been invaluable. I honestly don’t know where we’d be without them. Whilst you’re trying to come to terms with the fact your child has had a stroke, you’ve also got a hundred other things running through your mind; like how to tell the school that Arshaad needed support as the head teacher was struggling to understand what had happened, where to get support and what to do next. It’s completely terrifying.

“The Stroke Association were able to guide us through our darkest days, and they gave me the motivation and encouragement to speak out and get support. Without them I wouldn’t be where I am today – we are so blessed and cannot thank them enough. The real turning point for us was attending the Stroke Association’s Parent Childhood Stroke Support and Information Day last year; that’s when we realised we weren’t alone.”

There are over 400 childhood strokes a year in the UK. Three quarters of these are in children aged under 10. The Stroke Association’s Parent Childhood Stroke Support and Information Day offers parents and carers of children affected by stroke, the chance to meet others in a similar situation and access information and resources offered by the charity.

Lailee said: “Attending the event helped me to open up. Before that day, I was always living in fear that no one believed me, or that no one understood what was happening – Arshaad looks like a healthy boy, you can’t see the hidden disability he is living with every day. When you’ve spent eight years bringing up a healthy and happy child, to have the rug pulled from under your feet so quickly, and to be left with a child battling so many issues, is frightening.

“The Stroke Association’s Parent Childhood Stroke Support and Information Day helped me to speak to other parents in a similar situation, and understand I’m not alone. Throughout the day I kept hearing stories from parents where I would sit in disbelief, knowing I’d been through the same thing as them. Everything suddenly begins to make sense and I felt so empowered to stand up for Arshaad and do all I can to help him get better.”

The Stroke Association’s next Childhood Stroke Parent Support and Information Day will take place on Saturday 22 September 2018 in Lambeth. The day with include talks from parents, healthcare professionals and children charities.

Anna Panton, Childhood Stroke Support Service Manager at the Stroke Association said: “Many people think strokes only happen to older people, so a stroke in a baby or child can come as a big shock.

“Childhood stroke can affect the whole family. Like Lailee, parents often feel a range of emotions, from shock and bewilderment to feelings of isolation and frustration. Families often don’t know where to turn for information and support following their child’s stroke. We hope that this event will go a long way in changing that.”

The Childhood Stroke Support Service is a collaboration between the Stroke Association and Evelina London Children's Hospital.

For more information about the Childhood Stroke Parent Support and Information Day and to book your free place, please visit: www.stroke.org.uk/childhoodevents. Please note the event is for parents/carers only, and you need to register in advance.