A mum whose severely visually impaired son has dreams of becoming Apple’s next CEO is raising money to help make sure other children with sight loss get the same level of support and opportunities.
Michelle Wain, 31, from Tameside, became concerned that ‘something wasn’t right’ when her son Alfie was just six weeks old. The new mum says she noticed Alfie’s eyes would ‘bounce side to side’ and started to spot differences between him and other babies of a similar age.
Michelle said: “I had a mother’s instinct that something wasn’t right.”
Alfie was later diagnosed with Leber’s Congenital Amaurosis (LCA), an inherited eye condition that causes severe vision loss. Babies with LCA often have poor sight that swiftly deteriorates, with many ultimately losing their vision completely in childhood.
Michelle, who works as an NHS psychological wellbeing practitioner, says the diagnosis came as a ‘shock’ as no one else in her family has the condition.
“I didn’t know anyone else with the condition, so it was quite a big shock. I had no idea what Alfie’s life would be like,” she said.
Following Alfie’s diagnosis, the mum-of-one was introduced to the team at Henshaws, a charity that supports people living with sight loss and other disabilities across Greater Manchester. Alfie and Michelle have been supported by the charity ever since.
“Henshaws helped with everything, from understanding braille to advocating for Alfie’s needs in school and getting the right support for him,” Michelle says.
Now 10, Alfie has no usable sight but instead of seeing his visual impairment as a barrier he has embraced technology and dreams of becoming the next CEO of Apple.
“He’s very intelligent and loves technology – that’s always the first thing he wants to talk about.
“He loves his gadgets and goes into the Apple store all the time and knows all the staff in there. He’s planning to become the CEO of Apple and make everything more accessible,” Michelle says.
Through Henshaws’ support Michelle says Alfie has grown in both confidence and independence and learnt vital life skills including cooking.
“The team at Henshaws never focuses on what the children can’t do. They will say, ‘Maybe you can’t do it like this, but we can adapt it, and you can still do it’. Removing those barriers has really built Alfie’s confidence,” she says.
Michelle says Alfie is also very creative, plays the piano and loves expressing himself through music and making songs. Aswell as growing in confidence, Michelle says Alfie has developed friendships that he struggled to make in school.
“He’s met his tribe through Henshaws. He’s met people around his age who he has things in common with and can relate to because of their own visual impairments,” she says.
Michelle says Henshaws’ support has been ‘massively important’ to her family.
“Within Greater Manchester theirs is the only support there is really, apart from local council visual impairment teams which help more with the education side.
“Unfortunately, there’s not a lot of things for children with visual impairments to access, like sports groups. Having Henshaws enables them to have those experiences, and means they’re not left out,” she says.
On Sunday, May 18th Michelle is taking on the AJ Bell Great Manchester Run to raise money for Henshaws and help ensure other children get the same support as Alfie who has donated £6 out his pocket money. Support Michelle by donating via her JustGiving page.
This spring Henshaws is running a Matched Funding Appeal that means all donations made to its Children and Young People’s Service will be matched pound for pound until 30th June. As a result, supporters can help twice as many children and families access the charity’s life-changing services. To transform a child’s life like Alfie’s, make a donation here.
