Safer home for Curtis who has a rare form of epilepsy – Dravet Syndrome
Curtis, age four, suffers from frequent seizures and needs round-the-clock care. And summer heatwaves resulted in a seizure and a hospital visit for Curtis and his parents Emily and Carl.
On behalf of Curtis and his family, James Garlick, Digital & IT Service Delivery Manager at Axis, applied to the Axis Foundation for support – in the form of air-conditioning units. James explained that simply keeping Curtis cool reduces the constant risk of seizure and makes his home safer for him.
The Axis Foundation paid for the air con, and Axis operatives installed the units in Curtis’ bedroom and playroom and in the lounge.
“We want to say a huge thank you to the Foundation for investing in this for us. We can never convey how much your support means to our family – you’ve made our home a safe place for Curtis all year round” – Emily, Curtis’ mum
Curtis’ mother Emily explains more
“Due to Curtis’s very rare syndrome (Dravet) he is unable to properly regulate his temperature. This is a significant issue because when he gets too hot he is susceptible to seizures. These can range from increased seizure activity, leaving him unable to focus on a task, to a full tonic clonic seizure, involving initiating his rescue plan and a trip to A&E.
“This led us to start to feel anxious for him around the summer months, especially with increasingly frequent spikes in temperature for prolonged periods. We invested in portable air con units but these confined Curtis confined to two rooms of the house; often being fed, playing and changed in one room all day.
“He’s a reasonably active four year old, who wants to run about from time to time. So this often led to frustrations for both him and us. Furthermore, moving the air con units around the house is extremely difficult because they weigh around 30kgs each.
The difference for Curtis
“The new, properly fitted air con allows Curtis to live and play safely and normally in the house as any child should. He will be able to use the full extent of downstairs now and we can let him run around without fear that he’ll overheat due to the weather.
The difference for Emily and Carl
“It really will be life changing for us. We’ll no longer have to carry a unit up to his bedroom to try and cool it before he sleeps and can hopefully adjust the temperature to keep him cool all night.
It’s a massive relief for us and gives us back a bit of normality in the summer months. It will remove the constant anxiety we have for him in the summer.”
Thanks to Axis Foundation from Curtis’ grandparents
We can never thank you enough… It was the most wonderful gift you could bestow on Curtis and our family – the continuation of our dear little grandson’s life. It is so wonderful in 21st century when we hear on the news everyday of shootings; stabbings and all the violence that a lot of people impose on their fellow humans to hear of people who are prepared to go that extra mile at their own expense, to help families have a better quality of life.
More about Dravet Syndrome here