Yahoo News Teachers to be gunged at colour walk to raise money for Wallsend seven-year-old with rare genetic condition's foundation
Teachers at a North Tyneside school will be gunged to raise money for a foundation dedicated to a boy who has a rare genetic and life-limiting illness.
Ellis Lake, a former pupil of Hadrian Park Primary School, was diagnosed with metachromatic leukodystrophy (MLD) after beginning to struggle with his balance and co-ordination in summer 2022. The rare genetic condition affects the white matter in the brain, and causes a progressive loss of physical, and later, mental skills.
The condition has caused Ellis, who turns eight next month, to lose his ability to walk, yet on Friday, June 28, he will lead his schoolmates on a colour walk from his wheelchair around the Hadrian Park Estate. There are four paint stations on the walk, where parents, residents, and "anyone who wants to join in" can throw paint over the children.
It will culminate on the field next to Hadrian Park Primary School, where Ellis's former teachers have agreed to be gunged, with his classmates buying raffle tickets in the hope of getting to throw the throw the messy liquid over their teachers. It is the second year that the colour walk has gone ahead, with all proceeds going to the foundation set up by his parents Tracy and Andy.
The Ellis Lake Foundation supplies hygiene packs to parents whose children are being treated at the Royal Victoria Infirmary in Newcastle, and more recently, Northumbria Emergency Specialist Care Hospital in Cramlington, Northumberland. Tracey Lake, Ellis's mum is delighted that the walk is returning and that the school are continuing to support Ellis and the foundation.
It is one of a series of events going ahead to raise money for the foundation, following a winter wonderland which took place in December.
Tracy told ChronicleLive: "It's lovely, he's really made an impression on everyone there and it's great that they still want to help us and support us. Aubrey (Ellis's younger brother) is going to there eventually as well, so it's nice just to keep that connection going with them and it enables us to do more (with the foundation)".
Tracy and Andy were initially told that Ellis most likely wouldn't make it to his 16th birthday - and that there was a possibility that his baby brother Aubrey would also have MLD. Despite there being no treatment for the disease, Manchester Royal Children's Hospital became the first, and at the time of writing, only site to offer the gene therapy Libmeldy on the NHS in spring 2022.
Though Libmeldy is usually offered to children with late or early juvenile forms of the disease who have not yet developed symptoms, Ellis passed strict assessment tests and became only the fourth child in the UK to be treated with the drug, and the first after developing symptoms of MLD.
Though he has lost the ability to walk and sit unaided, the treatment should halt the condition's progress any further. To find out more about the Ellis Lake Foundation or to donate, visit the link.
