The teens, led by Brinsbury College student Hollie Cheesman, spent last summer completing the National Citizen Service (NCS) programme and fundraised to buy an Opti Aura sensory projector for Maxwell Smith.
The soothing, shape-morphing light projector is now installed at Maxwell’s home and dad Peter says his son ‘absolutely loves it’.
Maxwell, six, has a rare genetic disorder, mitochondrial Tk2d, which causes progressive weakness of his muscles.
He needs round-the-clock care and cannot breathe or move without support
“The light projector is now an important part of Maxwell’s day,” said Peter. “It’s the first thing he sees as he wakes in the morning and it soothes him to sleep at night.
“Knowing that Hollie and her teammates organised events and volunteered a large part of their summer for Maxwell’s benefit is truly inspiring. It was a great achievement.
“With so many expenses to cover for Maxwell’s care, any extras to help stimulate and interest him are very welcome.”
Hollie, who is 17 and from Storrington, described herself as being ‘the most quiet, shy person ever’ before undertaking NCS.
After two weeks of challenging outward bound activities and independent living tasks, she and her teammates planned social action projects including a music performance, sponge throws and selling merchandise to fundraise almost £400 for Maxwell’s projector.
Hollie said: “Maxwell and his family live near me and I knew we could do something positive to help.
“It was a challenge for me as I didn’t like speaking on the phone and it took in the region of 50 phone calls to organise all the activities, but NCS really built my confidence.
“I made some great new friends and we all appreciated how lucky we were to have the opportunity to try new things on NCS.
“I’m glad we have now given Maxwell a new experience to enjoy too.”
NCS, run regionally by Ingeus, is a leading youth empowerment programme, open to all 16 and 17 year olds, that takes place in school holidays.
Social action for a local community cause or charity is an integral element.
Maxwell is the only child with mitochondrial Tk2d alive in the UK today.
His family and local community fundraise tirelessly for medication, hydrotherapy, physiotherapy and specialist equipment to give Maxwell a better quality of life.
For more information about Maxwell and how you can support him and his family, visit www.ourmaxwell.org
To find out more about the NCS programme, visit www.wearencs.com