Helping care for a small child with Ataxia Telangiectasia (Louis-Bar syndrome)
Little Mollie has Ataxia Telangiectasia, a devastating, rare, inherited childhood neurological disorder. It affects the part of the brain that controls motor movement and speech.
The disease is also known as disease Louis-Bar syndrome. It is complex and additionally affects the lungs and immune system as well as causing sensitivity to radiation and increased risk of cancers.
It is also progressive and there is no cure. Decline starts increasing from age of five and little Mollie has recently turned six. It is most likely that is she will need a wheelchair by the age of 10.
Moved by the plight of Mollie, the Trustees of the Axis Foundation agreed to a donation of £11,133. This will purchase her a Mollii suit (designed to relax muscles through neurostimulation), a Gallileo vibration board (to help with muscle tone) and also some specialist physiotherapy.
Emily Barker, Mollie’s mother, said: “Thank you so much for your email – we are over the moon that Mollie’s application was successful and so grateful she will now have access to a Mollii suit and Galileo board along with the specialist therapy.
“Our little girl deserves the best opportunities and chance in life so thank you so much for helping to make this happen – it really means the world to us.”
“We realise that right now without a treatment available the best options for Mollie are to support her strength and abilities with specialist therapies. We are therefore currently planning a Mollie’s Miracle Family Funday in August – this will be to raise money directly for Mollie to take part in extra therapies such as horse-riding therapies and hydrotherapy to ensure we are doing all we can to keep her muscles strong and help fight the symptoms of this devastating disease.”
Molllie’s parents run Mollies Miracle, with support of friends and family, raising funds to research into Ataxia Telangiectasia. More information here
Headway West London helps brain injury survivors and their families, helping them reconnect with their local communities.
The Axis Foundation’s donation of £3783 will support their computer/ mobile contact work including one-to-one support, online workshops, educational support work and health talks.
“We are very grateful to all at the Axis Foundation for their kind donation. This will assist us in providing our linkworkers with the best possible infrastructure to carry out their work with our members as efficiently as possible, and therefore enable us to support as many people as possible. Thank you from us all” – Laura Murphy, Chair of Trustees
More about Headway West London
A brain injury can happen to anyone: through a fall, a road accident, a sporting incident, an assault, a tumour or haemorrhage. Acquired brain injury is often known as the hidden disability. Survivors are often lonely, isolated, bewildered and very distressed by the sudden and dramatic changes to their lives.
Affiliated with Headway – the brain injury association, Headway West London helps ensure vulnerable, isolated brain injured survivors do not fall through the net, supporting them through one-to-one sessions, targeted training pathways, return to work support as well as health and wellbeing sessions, in-person and online.
They work in the west London boroughs of Ealing, Hounslow, Hammersmith & Fulham, Kensington & Chelsea, and Westminster and have established close links with St Mary’s Hospital Paddington and Charing Cross hospitals, Hammersmith trauma clinics and Brain Odysseys, a performance arts intervention group designed with people living with brain injury to support recovery through song writing, music, dance and performance.
“HWL offers a great service supporting our patients and their families, particularly in the early days when things can be very overwhelming. They are able to offer advice and in particular help families with both emotional and practical needs. As a therapist it is so helpful to have their service to help support us in educating families and offering support when you can at times feel helpless as a clinician” – Natalie Marroney, Neuro Trauma Therapy Lead at St Mary’s Hospital
Axis’ Walter Shave recently climbed Mount Kilimanjaro raising a fantastic £2,500 for Demelza and First Halesworth Scout Group.
The two-week expedition, which was completely self-funded by the team, took just over two weeks to complete and created memories to last a lifetime.
Located in Tanzania, Mount Kilimanjaro is the African continent’s highest peak at 5895m (19,340ft) and is the highest free-standing mountain above sea level worldwide.
The team started off by climbing up two smaller peaks nearby to acclimatise to the altitudes. And then it was time for the main event! The climb up Mt Kilimanjaro started after additional training in the rainforest. Every day Wally and his team climbed a total of 1000m which is the equivalent of Mount Snowdon!
On the summit day, they woke up at 1am to reach the top just in time for sunrise. Wally reports: “We noticed that we were struggling a lot to physically move due to the lack of oxygen at that altitude, our average speed was 1.2km per hour! It was hard to believe that our oxygen levels went down to an astonishing 70%. When you are at sea level, if your oxygen levels go down to 92% you need to be rushed to A&E! The last 250m we walked through glaciers to reach the summit which were incredible: planes were flying below us! Once we reached the summit it was a feeling of such achievement and joy surrounded by amazing views and a beautiful sunrise, we will cherish that moment for our lifetime!”
For his scout group, First Halesworth Scout Group, the money raised will help fund an annual scout trip to Scotland or Switzerland for less fortunate members. For Demelza, the money will help to ensure every child and young person who has a serious or terminal condition receives the care and attention they need to live the most fulfilling life they can.
“Young people are our future! If I can make a small but meaningful contribution to both these fantastic organisations by giving up some of my time and sweat, then it’s a win win all round.”
Read more about our precious partnership with Demelza here.
And there’s more about how we helped First Halesworth Scouts here
The Axis Foundation is proud of our precious partnership with Demelza Hospice for Sick Children. In our 13-year history, the Foundation has donated £707,000 to Demelza.
Our donation of £6,000 to Demelza was one of our Foundation’s very first donations. And when our Foundation’s donations reached an impressive total of £2m (July 2022) we were delighted to present Demelza with a cheque for £89,000 which marked our £2m Moment.
Like all good friends… we share some history
Our friendship with Demelza goes back nearly 20 years – all the way to 2004. We had formed a charity partnership even before the Foundation was born.
Our parent company Axis supported Demelza’s Bricks and Water appeal creating a Hydrotherapy Centre and two new bedrooms for teenage patients meanwhile refurbishing two existing bedrooms at their Sittingbourne hospice, Kent
Axis also contributed to building a new hospice in Eltham in south east London. Olympic champions and Demelza vice presidents Jayne Torvill and Robin Cousins opened the new premises in 2009. Celebrating the first anniversary of the Eltham hospice in 2010, our people joined Demelza supporters, nurses, children and their families at the ‘polka dot tea party’.
Like all good friends, we share some major triumphs
When our Foundation’s donations reached an impressive total of £2m (July 2022) we were delighted to present Demelza with a cheque for £85,000 which marked our £2m Moment!
And yes, like all good friends we share great sadness too
When Liam and Amy Hayes’ son Benjamin Jeffrey John Hayes was born in 2019 and suffered brain damage during birth, the family took Benjamin to Demelza where, as Liam says:“They helped us make happy memories, even at the toughest time our family has ever been through.” You can read Benjamin’s story here.
We Axis people love Demelza
Axis people are in their element – snow, ice, water, air, mud – when we are fundraising for our charity partner Demelza. Tough Mudder challenges, cycling to Paris, swimming, boxing, flying, running, climbing in the Arctic, walking hundreds of miles, dancing, baking, eating (even not eating) – there’s no stopping us when it comes to raising funds for Demelza and the Axis Foundation. There’s more about our challenges here
Our clients, suppliers and subcontractors too have generously given at our golf days and charity ball to support both charities.The Axis Foundation’s Winter Appeal 2021 raised £75,000 for Demelza thanks to Axis people, our suppliers and subcontractors. And our 2021 Charity Ball raised a whopping £340,000 for the Axis Foundation’s small, local and impactful charities – including Demelza.
Foundation Funding Focus is mainly on the areas where our parent company Axis Europe works to make social housing properties safe and comfortable for residents: in London and the South East and Essex. Demelza offers hospice care in Kent and South East London, as well as helping families across the South East.
All the money we raise goes into Demelza’s Adopt a Nurse programme, which brings a nurse full-time for one year. As well as visiting the children at the Hospice, the nurses also see their families at home to help with medication and physiotherapy as well as aid the parents in their time of need.
£100 buys nine hours of nursing care for a child with a life-limiting illness at Demelza.
Donation to Lifelites provides assistive technology for children with life-limiting illnesses
The Axis Foundation’s donation of £5,000 to Lifelites will buy assistive and inclusive for technologies to help children with life-limiting illnesses who attend Demelza Hospice Care for Children, the Axis Foundation’s charity partner.
“Lifelites is incredibly grateful for the support of the Axis Foundation. The Covid-19 pandemic has really highlighted life-limited and disabled children using hospice services as some of the most vulnerable and isolated in our society.
“With this donation from the Axis Foundation, Lifelites will be able to provide life-changing technology so children at Demelza are able to communicate, play, engage with the world around them and control something for themselves” – CEO Simone Enefer-Doy
Case Study – JJ’s Story
Eyegaze is just one example of Lifelites’ assistive and inclusive technologies. Here’s a first-hand report of how it helped one little boy.
“Before JJ was diagnosed with ALD, he was an able young boy, attending a mainstream school. Once diagnosed he slowly lost the ability to walk and talk. The Eyegaze works really well for JJ as a form of play and interaction. He enjoys using all the apps within the Eyegaze, allowing him to create art, and make different patterns on the screen, just by moving his eyes. It is a great way to socially interact with him.
“JJ enjoys making drum beats on the Eyegaze. This is fantastic as he is able to do it on his own, encouraging his independence, when normally he needs assistance with everything. JJ used to love playing the drums before he became unwell.” – Charlotte, JJ’s care assistant
Our donation to Lifelites will help them procure, install and maintain assistive technology like Eyegaze at Demelza, helping life-limited children as well as their siblings, parents and other family members.
More about Lifelites
Lifelites consults, pilots, procures, installs and supports and maintains bespoke packages of assistive technologies for every children’s hospice service in the British Isles.
They train care staff in its use and application on an on-going basis to ensure the equipment is in constant use for the children for whom every second counts. Lifelites has 60 projects across the British Isles.
Using the power of assistive and inclusive technology Lifelites aims to give every life-limited and disabled child using hospice services the opportunity to play, to communicate effectively, to take part in creative activities and to choose and control things for themselves.
Assistive technology enables life-limited children to communicate and interact with their well siblings as other children, to engage meaningfully with parents and carers and to remain engaged with their world for as long as possible.
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.
Liam and Amy Hayes’ son Benjamin Jeffrey John Hayes was born on Sunday 12th May 2019 and sadly passed away 10 days later.
This is Benjamin’s story, told by Liam:
“I know many of you will have heard our news because you’ve been overwhelmingly supportive and caring, it’s been felt by both Amy and myself and is hugely appreciated. But I wanted to tell Benjamin’s story because I’m still a proud dad and also because it highlights the importance of charities like Demelza, who Axis supports through our Foundation.
“After a healthy pregnancy we arrived at the hospital excited about the birth and ready to meet our little boy. But our joy turned to concern when the midwifes discovered Benjamin’s heart rate had dropped in the final stages of labour and despite the best efforts of the midwifery team, the lack of oxygen being delivered his organs had left him with severe brain damage.
“Benjamin was transferred to the Oliver Fisher Neonatal Unit in Medway where the doctors and nurses gave him the very best care they could in the hopes of reversing some of the damage done to his brain.
“Very sadly this is something that cannot be predicted in babies and there is no reason as to why it happens. It is all out of anyone’s control. We now know that 3 in 1000 babies are affected by HIE during labour or at birth.
“Benjamin fought hard but despite his courage and determination his brain condition wasn’t going to improve and his little head just wouldn’t tell him to breathe.
“After the medical teams had done all that they could, we took Benjamin to Demelza. They helped us make happy memories, even at the toughest time our family has ever been through.
“We had a teddy bears’ picnic in the garden with Benjamin’s grandparents, aunties and uncles. We held Benjamin whilst we all had tea and cake and listened to music.
“When it was the right time for Benjamin to fall asleep, it was so calm and peaceful. Benjamin didn’t suffer any pain during his short life which gives us some comfort.
“During the darkest days the wonderful staff at the Oliver Fisher Neonatal Unit and Demelza provided support and comfort.
I felt it was important to share this because we’ve had so much support from friends at Axis and the Hospices, Amy and I wanted the chance to say a huge heartfelt thank you to you all.”
Thanks to the generosity of our guests and the people of Axis, the Axis Foundation’s annual charity ball in 2019 raised a record breaking amount for Demelza and the Oliver Fisher Neonatal Unit. More about the charity ball here
Sensory log cabin for children at a special school
Simon’s Heroes supports life-limited and disabled children in Tamworth, Staffordshire. They provide, for example, mobility equipment, wheelchairs, frames, profiling beds, sensory equipment, bedroom makeovers and short breaks for families and children when time is short and precious.
The Axis Foundation’s donation of £3,000 will help Simon’s Heroes with their project at local special needs school Two Rivers in Tamworth. The donation will contribute to providing a sensory log cabin, where essential therapy sessions will be held.
Here, 120 children whose disabilities range from cystic fibrosis to cerebral palsy, downs syndrome and the full autism spectrum will use the cabin which will continue to improve the experience of children attending the school for years to come.
“The sensory lodge will be a calming and peaceful area for individual children to use to carry out their therapy session. With the sensory equipment and space, this is the perfect area away from the main school building. We can’t thank Axis enough for their generosity. To be able to provide the sensory lodge is a dream come true not only for us, but for the children now and in the future.” Justin Haywood Chairman
The Axis Foundation is celebrating its 10th Birthday this year, signifying ten years of support for small, local, impactful causes. Share the good news #10yrsgiving
We presented our donation to Demelza – a cheque for £70,000 – at the second Alan Curbishley Celebrity Golf Day in May 2018.
John Hayes, Axis Europe’s CEO, presented the cheque to our charity partner saying: “Demelza has remained dear to the hearts of all Axis people for a long time and we shall continue to support this incredible charity in their work ‘adding life to days when days cannot be added to life.’ I know that I speak for everyone at Axis when I say how profoundly moved and delighted we are to have a charity partner which has such an impact on those lives it touches.
“I am delighted to present this donation to Demelza: a cheque for £70,000 from all of us at Axis, knowing that this donation will make a real difference in Demelza’s hands.”
Ryan Campbell CBE, Demelza Chief Executive, said: “Axis Europe and the Axis Foundation have been fantastic to us with unwavering, constant support for the last 14 years, raising over £540,000. We are so proud to be one of Axis’s chosen charities.
We are overwhelmed every year by their kindness and generosity to the extremely ill children we support. We really couldn’t continue to provide our tailored, expert care to so many families without them.
“On behalf of these babies, children and teenagers and their families; our staff and our volunteers, thank you so so much for this Donation to Demelza 2018.”
Thanks to our generous guests and supporters, our second celebrity golf day raised £26,000 which will support Demelza and many small local and impactful causes via the Axis Foundation.
The Axis Arctic Challenge team wins coveted Demelza Business Prize for their extreme fundraising adventure on behalf of our charity partner
The Axis Arctic Challengers raised funds for Demelza Children’s Hospice by braving the cold, heat and dangers of the Arctic. They conquered Mount Kebna – dizzy heights indeed!
The challengers are Christopher Houlihan, Gary Perfect, Philip Twin John Bull and Daniel Blake. Through the hardships of snow, heat, dizzy fits, thirst and hunger, they said that what kept them going was remembering the children for whom Demelza cares.
This was reward in itself for the challengers. But they were delighted to learn that their supreme efforts scooped them Demelza’s Bespoke Fundraising Event of the Year Award – We were also nominated for the Silver Outstanding Corporate Supporter Award!
The judges said
Announcing our win, the judges said that our team “took on a tremendous challenge… They hit extreme and unexpected weather, even causing them hallucinations! But they battled through and completed their trek. Very worthy award winners.”
Our Arctic Five said: “We are so pleased that Demelza gave us this award. We pushed ourselves to a place we did not know existed. We kept thinking about the kids at Demelza. We had a hard few days. Their entire life is hard. We got a real sense of achievement.”
Our Community Investment Coordinator Kellie Durey said: “We cannot thank Demelza enough for our nominations and the big win: it is lovely to see that our support is both appreciated and recognised.”
Congratulations to the Axis Arctic Challengers for their extreme fundraising efforts!
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