Contact grant helps give children with rare condition access to ground-breaking technology
4 mins read
Monday 23 August 2021
A small support group for families caring for children and young people with a rare neurological disorder called Rett syndrome is set to benefit from a grant of just under £7,000 from Contact to continue its vital work.
Rett UK will use the funding to expand its team of trainers who help families across the country to use ‘eye-gaze’ technology to communicate their feelings, wishes and opinions using the power of their eyes.
Becky Jenner from Rett UK says: “The loss of speech and use of hands can be the most debilitating and distressing aspects of Rett syndrome and makes meaningful communication extremely difficult. The grant awarded to us by Contact means we can increase the number of families we can help to use the eye-gaze controlled devices that we loan to families.
“Families who use eye-gaze technology say it is life-changing. Hearing your child tell you for the first time where the pain is, how they are feeling or ask for pain relief for example, is nothing short of life miracle for many families. It can have a direct impact on an individual’s physical and mental wellbeing by reducing feelings of frustration, anger, anxiety and depression. Parent carers feel empowered to help and delight in the results that autonomous communication with their child can bring. Being able to hear your child say they love you for the first time is pretty special!”
Most families who care for a child with Rett syndrome have been shielding since the pandemic started with very little or no external support as they continue to juggle home schooling, work and providing 24/7 care for their children.
The support and training offered by Rett UK to help families use the eye-gaze devices they loan out also helps families to build the case to apply for funding for their own device through charitable funding sources. The cost of these devices are prohibitive for most families, but the assessment process means that families need to show competence in being able to use the device before funding is approved.
Mum Sarah Scott whose daughter, Betsy has benefited from Rett UK’s support says: “Loaning an eye gaze device through Rett UK has been life changing. Our daughter Betsy lost all remaining speech this year and was diagnosed with A-typical Rett Syndrome in July. Betsy suffers terrible anxiety and this was made worse by her regression and being unable to express what she wants. She was a very sad little girl at times and we felt desperation and sadness at what her future would hold.
“Rett UK changed our world, loaning us an eye gaze device and offering full support to teach Betsy. This was extended to school as well as us. From day one Betsy was given the ability to communicate with us like any other little girl, often asking for cheeky requests like McDonald’s and laughing just like other verbal children would! Our sad child is smiling more and with the wonderful news that Betsy is receiving her own eye gaze device, suddenly her world has a whole lot more options as she learns to navigate the device going into adulthood.
“We are at the very early stages of learning, most importantly Betsy actually wants to engage with the device which is huge for her. As parents, we are excited and have positive hope for the future that we can give Betsy the best opportunities to communicate. We will be forever grateful for the chance to try such a wonderful device and have the support of Rett UK , thank you to all those involved in making this happen not just for ourselves and Betsy but all the other families and children that benefit from this opportunity. Without it our world would be a whole lot smaller. Thank you!”
Rett UK one of 150 rare condition support groups and parent carer forums to be awarded grants by Contact over the last 6 months. The grants have been made possible to a match funding partnership between Pears Foundation and the Department for Digital, Culture, Media & Sport (DCMS) and form part of the Government’s £750m emergency Covid-19 funding charities package.
As one of Pears Foundation’s trusted, long term partners, Contact was chosen to award and distribute each grant – worth between £5-10k – to individual support groups to ensure funding gets to frontline organisations and their communities.