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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Little girl and sister lying on rug togetherDisability

New Garden for Little Isabella

July 26, 2022By

Foundation makes garden accessible for Little Isabella

Little Isabella was diagnosed with a severe brain malformation when she was just three months old.Axis Resident Liaison Manager Cathy Weedon, who asked the Axis Foundation for help told us:

“Isabella loves to feel the wind blowing, it’s one of the things that makes her smile the biggest. For her to simply enjoy the sunshine in a lovely finished garden would be a miracle.”

And we were delighted to support Cathy’s application to remodel the family garden so that Isabella can enjoy her outside space. The Axis Foundation and supply chain partner City Plumbing Community Fund donated £6,550 to remodel Isabella’s family garden. Axis people in our Sittingbourne office will use their volunteering days to do the work.

Isabella’s story

Isabella was born in November 2013. Her family noticed soon after that she never cried or expressed emotions. They were deeply concerned despite being reassured by doctors that she was just a ‘good baby’. After suffering seizures, and in obvious pain, Isabella went to  Evelina Children’s Hospital for tests and urgent medical care.

Here she was diagnosed with a severe brain malformation called ‘subcortical band heteretopia’ which meant that she would not progress beyond her baby years. Her physical disabilities would be life-altering.

The family moved to a new home to accommodate caring for Isabella. They proceeded to make adaptations including levelling downstairs floors and the garden, adding a small extension and making all the rooms wheelchair accessible. And as Isabella grew and became heavier. they moved to a bungalow. But Isabella needed hoists, an adapted bath and bed, wider doorways and a ramp up to the front door to list just a few adaptations.

Local authority grants would not cover the entire costs and shortage of labour and COVID-19 meant severe delays and rises in costs. Isabella’s Nanna even sold her own home to fund the work.

Their main wish was that Isabella would be able to enjoy the garden  But the garden space and driveway were tiered and unsuitable for manoeuvring Isabella’s wheelchair. We are especially delighted that our donation will help Isabella enjoy her outside space which our volunteers will create.

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Axis CEO John Hayes handing over mini bus to Maypole charityDisability

The Maypole Project

September 5, 2020By

Support for parents of children with life-threatening illnesses

The long and happy relationship between The Maypole Project and the Axis Foundation dates back to 2016. Then the Foundation donated a minibus to this Bromley-based charity supporting the families of children with life-threatening illnesses.

Christened Mayble, the minibus transports over 500 children a year to different events and activities. Mayble also carries parents who lack transport to support groups, events and activities.

“Everyone at The Maypole Project was absolutely amazed and delighted to hear that we were successful in our bid to gain a minibus. It will make a huge impact on the services we can provide to children with life-threatening illnesses and their families – where transport is frequently a major block to access. We will also be able to develop activities and outings that we have, until this point, put on hold! A winning asset all round – thank you Axis!” – Sally Flatteau Taylor, Founder and CEO of Maypole

“I think it’s brilliant. So many of us struggle just with the day-to-day and to get to a place is difficult. It will be great to get on the minibus and support the child there rather than have the child in the back of a small car, trying to take their seat belt off” – Maypole parent Ros Luff

“We would like to say a massive THANK YOU to the team at Axis for donating our wonderful minibus, Mayble. The Maypole Project organises lots of wonderful outings in their minibus which enable my child with special needs to be alongside their siblings … we think it’s absolutely amazing. Thank you to the team at Axis for donating Mayble, we would be lost without The Maypole Project’s support” Maypole parent

2017: Funding toys and equipment

The Axis Foundation made a further donation (£9,000, 2017) which helped purchase sensory toys and a wheelchair lift.

Sally Flatteau Taylor said: “Those who are chronically ill get great joy out of playing with sensory toys. The wheelchair lift gives direct and easy access to the family support room and the toilet which has been incredibly helpful for the children and their families. It has helped us support so many more children. It gives the children better access inside and outside of the building. The support from the Axis Foundation is amazing  is phenomenal for our charity. We really do appreciate it. It’s been really good to have the Axis Foundation’s support and belief in the work that we do.”

2018: Building a Sensory Barn for Maypole

In 2018 Axis Apprentices created a Sensory Barn in Maypole’s garden. This enabled all Maypole children to play safely in a stimulating and interactive room. It had long been on the wish list at Maypole and Axis was happy to help out. The full story of the Sensory Barn with pictures and video is here!

2019/ 2020: More support for Maypole

In 2019, the Axis Foundation made a further donation of £1,500 to help Maypole with their drumming workshops, which due to COVID-19 became online activities in 2020. A further donation of £5,000 in 2020 purchased more soft toys for the sensory cabin (built by Axis) and supported taking families on outings.

Maypole families said:

“Thanks so much again for accommodating us, it was such a lovely space for the kids. We had great fun and a great break.”

“We came to the horse-grooming/walking activity in Tonbridge and my child thoroughly enjoyed it. The peaceful setting, the one-to-one careful attention he received all helped to make it so memorable and enjoyable for him.”

“Thank you so much for the outing – we had great fun this morning.”

2021: Bespoke play boxes

The Axis Foundation funded 40 play boxes tailored to an individual disabled child’s needs with a donation of £1500 (2021). The Maypole Project recruited a play therapist to work face to face with the children (some of this online) during the Pandemic.

2022: Sensory play equipment

The Axis Foundation donated £6,866 towards sensory equipment, children’s t-shirts, and team sweatshirts. The sensory equipment includes floor mats, wall toys, fibre optic sparkle rugs, liquid floor tiles and light up toys.

“We are so truly appreciative of this generous award from the Axis Foundation to The Maypole Project – and of course all of the support – both financial and practical through the apprentices work in our buildings – you and your team have given us over the years that it’s hard to find the words” – Sally Flatteau Taylor, Founder and CEO of Maypole

Total donations to Maypole

Our donations to Maypole Project, supporting families of children with life-threatening illnesses, came to £66,000 in 2022.

Here is what Sally Flatteau Taylor said to us in 2021:

We can’t thank you enough for the wonderful donations you have provided us across the years. They are all in constant use:
Minibus – used in lockdown to make visits to families and in full use every day during the summer holidays when we had had our fullest programme of outings and excitement yet  including visits to the beach, riding, sailing, bowling, climbing and even to a shopping centre
Stairlift for back office – well in use: as the pandemic lifted we found families were desperately in need of new spaces, new activities, new toys and sensations for the children so we turned the back office into a soft and sensory play space initially used by one family alone (cleaned between sessions by one of our team) and now more families can meet there.
Garden – in full use, as it was when your team wonderfully transformed it!
Sensory Cabin – we have added much sensory equipment in there to make it a play therapy centre for children, and a quiet and calming space for adults
Play Therapy and Play Boxes: The children LOVE THEM and they are a definite and permanent feature of our work.

There’s more about Maypole here

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