Safer home for little boy with epilepsy

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.”

More about Dravet Syndrome here

 

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Group of adults at Paul's Cancer Support CentreCare

Paul’s Cancer Support Centre

Training volunteers to help cancer patients

Volunteers at Paul’s Cancer Support Centre provide emotional, physical and psychological support for 500 cancer patients a year. The Centre also has a Home Visiting Service for 100 patients who are too frail to make the journey to the premises in south west London.

The Axis Foundation has made two donations to Paul’s Cancer Support Centre. Our first donation (£3,300 in 2017) recruited and trained four massage therapists, three reflexologists and one befriender; our second (£2,500 in 2018) trained nine new Home Visiting Service volunteers.

“On behalf of the Trustees, staff, volunteers and clients at Paul’s Cancer Support Centre, I would like to thank you and your Fellow Trustees for all your support. We are truly grateful” – Scheherazade Ameer, Fundraising Manager

“Funding into our volunteers’ training is vital for us to provide support for cancer patients. We are so appreciative of the grant we received from the Axis Foundation. We cannot deliver our services without volunteers” Marisca Ribeiro, Services Manager

More About Training

Scheherazade Ameer, Fundraising Manager, explained: “All our Home Visiting Service volunteers have to complete our high-quality, specially-designed 32-hour course. A nationally recognised expert in cancer and bereavement counselling has assessed our course as ‘a model of excellence’. We then match our Volunteers to Home Visiting Service clients once we receive their DBS approval.”

A Trainee Home Visitor told us: “Helping others is a humbling experience which also provides a great amount of satisfaction. I hope to gain a better understanding of the challenges those with cancer face so I can provide more effective and supportive massage treatments to them and contribute to improving their predicament, even if for a short while.”

A Home Visiting Service client said: “During a time when I was housebound, barely able to move about and seeking psychological and emotional assistance, this was the only local organisation who was able to provide face-to-face counselling in my own home; I am so grateful for that, and for how quickly it was organised.”

 

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Child cared for at Demelza sat with parents.Demelza

Demelza’s Adopt a Nurse Scheme

We donate £54,000 – the equivalent of 2,680 hours of nursing care

At the first Alan Curbishley Axis Foundation Charity Golf Day in June 2017, the Axis Foundation presented a cheque for £54,000 to Demelza Hospice Care for Children‘s Adopt a Nurse scheme. The sum is the equivalent of 2,680 hours of nursing care.

Axis Foundation raises funds through an annual corporate donation and corporate events such as our charity ball. Axis people are also heavily involved in personal fundraising through activities that range from skydives and bake sales to dotty days and abseils.

At the cheque presentation to Demelza, their CEO Ryan Campbell said: “Everyone who works for or with Axis has gone above and beyond to support our families, raising vital funds so that we can continue to help those families when they need us the most. You have showed unbelievable spirit and determination, completing incredibly difficult challenges and raising a truly outstanding amount of money for Demelza’s Adopt a Nurse programme.”

Demelza Parent Mette explained: “As well as memory-making and emotional support Demelza also gave practical help – from the community nursing team making phone calls and liaising with various agencies to staff at the hospice tackling paperwork. We didn’t need to worry about the cooking, cleaning, washing – we could just focus on Thomas.”

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