22 August 2019, 12:13
Alex TLC is a small charity that supports children and young people, and their families living with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN).
These are conditions classed as Leukodystrophies, which are a group of rare genetic diseases that cause damage to the brain, spinal cord and often the peripheral nerves.
The charity runs a helpline and a support service including home visits to provide practical support, advice and information to families living with these conditions.
Alex TLC also runs events to connect families and medical professionals, and provides financial support to help families cope with a rare disease.
The charity helps children like Chris and Emma’s 10-year-old son, William.
William was a very happy, normal boy excelling in school. He loved riding his bike and playing football. In November 2017 his parents noticed that William was finding things difficult that would normally be easy for him. Following an MRI scan William was diagnosed with ALD. This had a devastating impact on the family.
In just a few short months William lost his eyesight and had some difficulty hearing. He started needing a wheelchair when he was out. The family found Alex TLC within a few days and received a compassionate, reassuring person to help answer some of the questions they had. Alex TLC has been in constant contact since.
The charity has provided huge support to the family at home and at hospital appointments. The staff’s knowledge and lived experience means they are able to speak to the doctors with families and help to ask the right questions. William's mum, Emma commented: “It is reassuring to know that someone who understands is with us.”
“We know that Karen (Support worker) is always at the other end of the phone and she helps us in many different ways including emotional support when everything seems to be just too difficult to cope with, she is always calm and reassuring, a real lifeline when we need it most.”
Project supported by Make Some Noise
Global's Make Some Noise is proud to support the charity's 'Community Weekend' project, bringing families living with Leukodystrophies together along with medical professionals for a weekend of learning and networking.
The Community Weekend provides opportunities for families to talk to and hear from experts about the latest developments in research and understanding of the conditions. Families get the chance to meet others with these conditions and are able to build important peer support networks.
Through this project, children, young people and their parents learn how to manage their condition better and find new sources of support and guidance.
With your help, we can support projects like this one and many more across the UK.