disability

Improving lives and outcomes for people with Down Syndrome through music

Portsmouth Down Syndrome Association is committed to improving lives, opportunities and outcomes for people with Down Syndrome.

The Trustees of the Axis Foundation agreed to a donation of £3592.95 to fund the purchase of musical equipment to support their Music Man Project.

Music Man Project offers specialised musical education and performance opportunities specifically tailored for individuals with Down syndrome and other learning disabilities. It culminates in a televised performance at the Royal Albert Hall.

“This is wonderful news. Thank you for this generous grant which will enable us to purchase our very own instruments, making logistics much easier for the group and increasing our sense of ownership over the project.

“We will now be much better equipped to deliver our music sessions, giving the whole group more autonomy and confidence over what we do.

“Please pass our thanks on to Axis Team for their support for our project which will enable us to continue with our commitment to make music sessions and performance opportunities accessible to people with a learning disability” – Rachael Ross MBE, Chair

More about Portsmouth Down Syndrome Association

Portsmouth Down Syndrome Association ASSOCIATION provides friendship, information and a wide range of some of the UK’s best specialist educational services and social opportunities for children and young adults with Down syndrome.

Portsmouth Down Syndrome Association gained Freedom of the City of Portsmouth for their ‘outstanding social contribution to our community’ whilst Chair Rachael Ross was awarded an MBE on the Queen’s Birthday Honours List for services to education and Down syndrome.

There’s more here 

Bringing stories vividly to life for children with cerebral palsy

Dame Vera Lynn Children’s Charity supports children with cerebral palsy, chromosome abnormalities and rare genetic disorders that cause physical impairment.

The Trustees of the Axis Foundation were delighted to make a donation of £500 so the charity could purchase Bag Books. These contain a short story and physical props with which children interact, bringing the whole story to life and making it a much more sensory and powerful experience for them.

“Traditional storybooks are not accessible to children with Profound and Multiple Learning Difficulties (PMLD). So, I want to thank you the Trustees of the Axis Foundation for your kind decision to fund Bag Books for our children. This really will make the world of difference to the children we support, allowing them to enjoy story time in their sessions” – Glenys Creese, CEO

More about Dame Vera Lynn Children’s Charity

Dame Vera Lynn Children’s Charity helps children under five years with cerebral palsy and other motor learning impairments make the best possible start in life – giving the children as much independence as possible and giving families the support and skills to continue their development at home.

Many of their children have additional needs such as visual and hearing impairments, speech and language difficulties and issues with eating, drinking, and respiration. Some may be life-limited and all have conditions that affect the development of their cognitive, communication, and social skills.

There’s more here 

Photo: ‘The Little Seed’ Bag Book has many interactive elements for children, including smells and things to touch

Donation buys therapeutic exercise trainer for young boy confined to wheelchair

Just before he reached 10, Jude Keil was a normal active and growing young boy. He was an excellent cyclist and swimmer, regularly completing 10 miles off roading with his Dad and could happily snorkel for hours, chasing fish in the sea.

But in July 2022 his parents, Emma and Peter, noticed Jude was experiencing a shortness of breath. More complications followed and in February 2023, eventually his nervous system broke down and prevented him from breathing, moving or talking on his own.

After 11 months at The Evelina London Children’s Hospital, Jude is now confined to a wheelchair, reliant on a tracheostomy and a ventilator to breathe. He communicates by eye movements. His condition still has no name, and it may well be that he is the world’s only sufferer. The closest the medical profession can come to diagnosis is that it an unknown type of motor polyneuropathy.

Emma and Peter reached out to the Axis Foundation for help – and our Trustees were delighted to make a donation of £3,600 to enable them to purchase a therapeutic MotoMed Loop exercise bike for Jude.

Peter told our Trustees: “Thank you so much. This is fantastic news, not only for Jude but for us as a family. Jude always has been a great cyclist and in The Evelina hospital he was able to use a MotoMed machine so well. With this machine we will be able to ‘ride’ again together, albeit indoors or in the garden (when it finally gets warmer!).

“In the last 2 years we have seen and learnt so much. We have learnt that having the right tools for recovery is not only vital but so expensive.

“The likelihood of Jude having a full recovery is unknown due to the rarity of his condition. But we are determined to make sure he lives, rather than exists. He is now showing signs of nerve triggering to his muscles and requires complex and detailed physiotherapy.

With his current response to basic physiotherapy we believe that equipment such as the MotoMed would enable a significant muscle engagement. This will give Jude the chance to perhaps even stand or walk again! We are so grateful Jude has been selected for this award.”

You can find out more and support Jude directly here