Two small children Kaiden Burman and Marla BurmanDisability

New bed for little Kaiden

June 10, 2024By

Helping little boy with Dravet Syndrome – and his family

Axis’ Fleet Manager Taylor Burman applied to the Axis Foundation to acquire a specialist cot bed for his son Kaiden who suffers with Dravet Syndrome, a very rare and complex form of epilepsy.

Taylor told us: “We are always looking for ways on how keep Kaiden safe. He only sleeps about three hours a day and can be up all night. He needs monitoring systems constantly overnight. When we are at Demelza, he uses a specialist bed. It is electrically operated and has perspex panels and padding and is really great for him. So, I applied to the Foundation for help to buy something similar.”

The Trustees of the Axis Foundation were completely unanimous in their decision to support Taylor and his family and have made a donation of £11,000 to buy the bed.

Thanking the Foundation, Taylor said: “From the very day I started with Axis just under three years ago now, I’ve been supported by such a fantastic company. Axis is a company you want to stay with, there are no other companies like Axis, Axis is like a family, The Axis Family.

Taylor told us: “It was only two years ago, Kaiden caught Covid from hospital, at just one of his many visits, and due to his condition, we nearly lost him. It was extremely touch and go and unfortunately he had to be medically induced into coma. I remember ringing my manager at the time, David Crampton, and broke down in tears on the phone.

“The words and support I received from the board of directors, managers, colleagues and operatives were amazing. It was a tough time, but strangely that support helped us, helped Kaiden.

“I was later introduced to the Axis Foundation, constantly being told by [Foundation Founder, Axis CEO] John Hayes: ‘Taylor, the Foundation is your Foundation, use it.’

“I had always turned it down: my reasoning was, Axis does enough for me, and I wasn’t sure there is anything that could help Kaiden. I was WRONG!

“Kaiden started going to Demelza in Sittingbourne last year. We were extremely anxious about leaving him over night. He has no sense of danger at all. Our hospital consultants explained it like this: ‘If you put an item in fire, a normal person would keep away from the fire, but Kaiden would walk into the fire and sit in the fire to play with that item.’

“And because he also has epileptic seizures, it just wasn’t safe to have him in a normal bed. Demelza had a purpose-built specialist bed just for him, for children like him, something we have not seen or heard of. So I enquired with Demelza about the bed, the safety of the bed and most importantly, does Kaiden like it (he does!).

“When we were in the process of moving home, our wonderful [Foundation Trustee/Axis Divisional Finance Controller] Claire Pearce reached out to me asking if there is ANYTHING the Foundation could do for my family. The rest is history.

“My family and I would just like to thank the Foundation their support in providing the bed, it has taken a humongous amount of pressure off me and my wife. It’s very hard to put in words how thankful we are. Thank you!”

More about Kaiden

Kaiden, suffers with a disability called Dravet Syndrome, which is a rare and complex form of epilepsy. He requires 24/7 care at home and school and needs regular assistance at our charity partner Demelza’s hospice in Sittingbourne. Demelza’s home care team provide respite for the family too. including his sister Marla.

Because of related co-morbidities (including autism, mobility and sleep issues, low immunity and oxygen levels) and vulnerability to SUDEP (sudden unexplained death in epilepsy) Kaiden is also treated frequently at specialist hospitals including Evelina and Great Ormond Street as well as the family’s local hospital, Medway in Kent.

Up till now, he has slept in his parents’ room along  with all his vital equipment including Oxygen machine and bottles, medication, and seizure and oxygen monitoring systems.

As Kaiden, now five, grows and gets heavier it is increasingly hard to lift and carry him so the local council are re-homing the family to a larger home with hoists and lifts – and where he will have a room of his own.

And, thanks to the Axis Foundation, he now has a practical, safe cot too.

 

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Disability

Burton Wheelchair Rugby Club

June 4, 2024By

Gaining confidence through wheelchair rugby

Burton Wheelchair Rugby Club helps wheelchair-bound people enjoy the physical and mental benefits of a community team sport.

The Axis Foundation agreed to donate £3,650 to fund a new specialist wheelchair so more members can participate in the team sport, gaining independence, confidence and empowerment.

“That is brilliant news – thank you so much. Our heartfelt thanks to the Trustees” – Richard Williams, Fundraising Coordinator

Richard added: “Most of our members have suffered some form of trauma in their lives and lack confidence to continue feeling part of our community. We have already seen members who had given up hope join our club, be part of a team and feel whole again. We know there are hundreds of disabled members of our society who could join our club. Our plan is to expand the club to include junior members, so they don’t have to wait to become adults to be included.”

As well as supporting individuals’ wellbeing and health, Burton Wheelchair Rugby Club additionally engages with the local community to raise awareness of disability sport and also helps disabled people who are not permanently wheelchair bound too.

There’s more about the club which is based in Staffordshire, here

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Care

The Thomley Hall Centre

May 2, 2024By

Enhancing the lives and experiences of people with a disability

The Thomley Hall Centre is a lifelong learning and leisure centre which exists to enhance the lives and experiences of people with a disability, their families and the wider community. Thomley enhances the well-being of disabled people through delivering activities that helps develop the skills they need to run their day-to-day lives.

The Axis Foundation donated £10,000 so Thomley can build an eco-friendly Interactive Water Feature (IWF): a safe, fun and accessible place where people with and without disabilities in Buckinghamshire can enjoy water-based play.

Ewan Shinton, Thomley’s Chief Executive, told us: “A huge thank you to Axis, the interactive features of the IWF will offer experiences that are a huge amount of fun and developmentally important for our visitors. The majority of the people who visit Thomley are children with autism who have difficulties processing and integrating sensory input. The multi-sensory experiences provided by the IWF and water will be uniquely beneficial for them. We expect the IWF to quickly become our most-popular attraction and be used by everyone who visits Thomley.”

There’s more about The Thomley Hall Centre here

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little boy with fair hair in white tee shirtCare

Helping a Little Boy with Rare Genetic Disorder

January 31, 2024By

Donation buys a sensory room to help Toby, a little boy with rare genetic disorder

Six-year-old Toby Conway has an incredibly rare genetic disorder called De Novo ZNF 292 syndrome. It is so rare, his doctors and consultants have never previously encountered a patient with this diagnosis. And Toby’s parents are unable to find any other parents in a similar situation to share their experiences.

Toby has autistic traits, speech delay and extreme hyper mobility, His abnormal brain structure primarily affects his short-term memory (so he has some educational challenges). He is physically weak and has a high risk of epilepsy.

Despite all his challenges, Toby embraces mainstream education and loves his school. His parents told us:

“Every day, he runs into school with a huge smile on his face; it’s priceless. He is honestly the most polite, infectious and caring little boy. He is a pleasure to be around for both adults and other children. His school is amazing, and we’re hugely grateful for their support.”

The Axis Foundation Trustees awarded Toby’s school (Northgate Primary School Bishop’s Stortford, Hertfordshire) £10,000 to create a sensory room. This will not only help Toby’s sensory processing disorder but will also benefit the 100 neuro-diverse pupils at the school.

Thanking the Foundation, Toby’s father Mark Conway said: “This donation will make such a huge difference to Toby and all other pupils at his school, both neurodiverse and neurotypical. His school do an amazing job with limited resources, and their new sensory room will create a safe space for the kids that will be invaluable. Thank you so, so much.”

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Disability

Mobility for Little Kit

December 20, 2023By

Accessibility and mobility for little boy in wheelchair

Little Kit was an able child until he suffered a seizure at 18 months. Now age four, he cannot walk, talk or crawl.

The Axis Foundation’s donation of £7,000 creates an accessibility ramp for the family home.

“We’re so grateful, you have no idea what this will do for our family (especially Kit!)” – Katherine, Kit’s mother

More about Kit

Kit was an able child until he was 18 months old in 2021, when he suffered a 2-hour long seizure. This caused significant brain damage and visual impairment. Kit is now four. He cannot walk, talk or crawl and needs constant care and hoisting.

His family have struggled to pay the cost of adapting their home after this devastating event: they plan to build an extension with fully hoisted bedroom, bathroom and storage area.

They needed to build an access path and ramp as part of these adaptations – and also so that Kit can use his motobility vehicle. The Trustees of the Axis Foundation were delighted to help the family.

As his mother Katherine says: “We’re desperate to keep our son at home with us: but without the path we’re not allowed the extension and without the extension he will not be allowed to live with us (in the future).

“We want to give him the best life we can.”

You can support Kit here 

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Disability

Building for the Future

July 21, 2023By

Contributing to music therapy for children and young people with disabilities

Building for the Future was founded in 2007 by a group of parents of disabled children. In 2014, they opened Our House, a specialist, accessible play centre where families can meet and disabled children can relax, have fun and be truly valued and accepted for who they are.

The Trustees of the Axis Foundation agreed to donate £460 towards starter packs (mainly to purchase musical instruments) for their new music therapy group.

“Thank you so so very very much for supporting us. The children and parents will be delighted with the new musical equipment. Results from our trial sessions were phenomenal. Not only have the children enjoyed the sessions but they have learned something new, were engaged and focused for the entire time and learnt to relax. The parents couldn’t believe the transformation.

“It’s a really tough climate out there at the moment and small charities like ours are struggling to provide services for the most needy members of our society. Due to the pandemic and the rising cost of living crisis our services are even more in demand than they ever were before and we are busier than we ever have been. The success of the music therapy group is an example of this demand and we are so pleased to be able to take what was a one-off session and offer it on a more permanent basis for our families” –  Jane Holmes, CEO

More about Our House/Building for the Future

Winner of the Queen’s Award for Voluntary Service, Our House offers a range of facilities, including soft play, a sensory room, teen chill-out zone, PCs, gaming and free play area as well as activities such as Saturday clubs, after school clubs, holiday activities, physiotherapy and a youth group.  Parents and carers find support, solace and strength from one another; siblings can make friends with other children in similar situations; carers and grandparents can chat over a cup of coffee. Our House today helps over 500 children and young people with disabilities.

There’s more here:

 

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team of people with disability in powerchairsDisability

Farnham Powerchair Football Club (FPFC)

July 4, 2023By

Helping people with disability enjoy the sport of powerchair football

Farnham Powerchair Football Club (FPFC) offers children and adults with physical disabilities the opportunity to experience team-based sport and play powerchair football. Many are often excluded from clubs – and even school-based PE – due to their physical disabilities and lack of specialist equipment.

The Axis Foundation donated £6,775 to buy the club a new power wheelchair for their squad. Up to now, the club has been borrowing wheelchairs: owning their own Powerchairs enables them to help a growing number of children and adults, disadvantaged by their disabilities, enjoy a team sport in a safe, inclusive environment

“Thank you so much for this, we are thrilled, this will make a real difference to the Club, especially when we enter the South East League season in September. We have already seen massive benefits with many of the players gaining confidence, enjoyment and improvements with their mental health through powerchair football. The new powerchair we can buy with your donation means more players progress their skills and confidence both within the club environment and at matches. Massive thanks once again!” –  Sue Barnley, Secretary

More about Farnham Powerchair Football Club

Farnham Powerchair Football Club, based in Waverley, Surrey has a squad of 10 players and attracts other family members as well as players from the surrounding counties and London, some travelling 50 mins to come and play each week.

There is more about their work here.

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Disability

Sailability at Newhaven and Seaford Sailing Club

April 24, 2023By

Our donation brings enjoyment of sailing to people with disability

Sailability at Newhaven and Seaford Sailing Club Ltd gives all local people with a disability across East Sussex the opportunity to sail, to gain confidence on the water and develop new skills, so improving mental and physical health and wellbeing. They offer accessibility to sailing and boating for those with a disability and 20% of their participants are wheelchair users

The Axis Foundation’s donation of  £9,800 means Sailability can purchase a new specially-designed Hansa dinghy so a sailor can take those with a disability out on the water.

“A new dinghy will help us offer a better experience to participants, to grow as a group, meet the increasing demand for sailing and thus offer more participants with disabilities the opportunity to experience sailing and its many benefits”  – Chris Turner, Sailability Lead

More about Sailability

Sailability (a Royal Yachting Association (RYA) initiative) was founded at Newhaven and Seaford in 2021 and last year helped 32 participants over 124 sessions enjoy the benefits of sailing. This number is growing. They operate within Newhaven and Seaford Sailing Club Ltd (not for profit), a registered Sailability Centre, as part of their RYA Training Centre. Their boats are in full use for much of the year, sailing on an inland lake at Piddinghoe East Sussex.
There’s more here 

 

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Disability

The Woodland Centre Trust (Camp Mohawk)

January 20, 2023By

Providing work experience for children with cognitive and physical disabilities

Through Camp Mohawk, The Woodland Centre Trust offers secure, supportive and stimulating woodland space to over 1,000 children and young people with a wide range of cognitive and physical disabilities every year.

The Trustees of the Axis Foundation awarded a grant of a grant of £5,000 to The Woodland Centre Trust towards a small cafe/ tuck shop for their ” Working Together” work experience project at Camp Mohawk.

“On behalf of the Trustees and management team of Camp Mohawk I’d like to offer our sincere thanks to the Axis Foundation for your support for children and young people with special needs… The addition of a cafe is going to provide fantastic work experience opportunities for our young people and this fantastic new provision will be beneficial to all our families attending. Many of our children and their famiies have experienced extreme isolation and exclusion during the pandemic. They will benefit tremendously from the inclusive play, social interaction, learning opportunities and support that Camp Mohawk provides” – Charlotte Webb, Fundraising Manager

More about Working Together

For some young people with cognitive and physical disabilities, finding work experience that meets their needs is very difficult so Camp Mohawk creates structured opportunities within its familiar environment. For the first stage of this project they propose to provide customer service work experience by creating a small cafe/tuck shop on site to serve the needs of visitors. The Trustees of the Axis Foundation were delighted to support this project.

More about The Woodland Centre Trust (Camp Mohawk)

Based in Berkshire, The Woodland Centre Trust supports children, young people and families affected by a variety of diagnosed conditions including Autistic Spectrum Conditions (ASC), Downs Syndrome, sight and/or hearing impairments, cerebral palsy, brain injury, genetic disorders and various other life-limiting inherited, acquired or medical conditions. Whilst the majority of visitors come from  Oxfordshire, Berkshire, Buckinghamshire, Hampshire and West London, the service is open to all who might benefit from the experience. Schemes include Family Support, Short Breaks, Shared Play and Open Sessions.
In addition, the centre provides:

  • facilities which stimulate co-ordination, communication, socialisation and imagination
  • educational and recreational projects that help equip young people with special needs for eventual independent living
  • support network for young carers whose siblings have special needs
  • support for whole families affected by special needs to reduces stress and isolation and improve quality of life
  • a superb venue for local voluntary disability support groups, special schools and care centres.

There’s more here 

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Disability

Incredible Kids

January 19, 2023By

Providing toys and accessible activities for children with additional needs and disabilities

Bristol-based charity Incredible Kids enables children and young people with additional needs and disabilities to make friends, have fun, and play, increasing their mental wellbeing, and improving their confidence and social skills. Parents set up the charity to support each other and help reduce the social isolation typically felt by 72% of families with a disabled child.*

The Axis Foundation donated £1,000 towards purchasing new ‘bright and engaging’ toys and an accessible activity table for approximately 500 children.

“The funding from the Axis Foundation has already transformed our sessions with a new wheelchair-accessible activity table and a whole host of beautiful new toys and activities for the children at Incredible Kids to enjoy. We are so grateful for the opportunity to add new toys for the families that visit us. Thank you Axis!” – Jennie Prewett, Trustee

More about Incredible Kids

Incredible Kids offers support for the whole family in order to reduce feelings of isolation and increase overall mental wellbeing of disabled children, their siblings, and their parents/carers.

In 2019, 600 families accessed Incredible Kids’ services. Numbers of individuals attending have more than doubled since COVID-19 (from 1000 individual members to 2200).Through their own data collection, in-person interviews, and online surveys Incredible Kids show that after attending their sessions:

  • 83% of parents and carers made friends,
  • 76% of disabled children made friends.
  • 89% of families said they no longer feel isolated.

*The Hidden Isolation Report commissioned by Contact a Family states that “72% of families with a disabled child will experience mental ill health such as anxiety, depression or breakdown due to isolation.”

There’s more about their work here

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