Alex’s story

Like many people who suffer from a sight impairment, Alex’s vision deteriorated later in life.

In 2019, at the age of 49, Alex was diagnosed with Cone Rod Dystrophy, a rare disorder that causes eyesight to deteriorate over time. 

“I can’t visually identify people, I need them to speak or state who they are. This often creates a sense of isolation when I’m in a group of people. I rarely travel outside my hometown as I lack confidence when alone.” 

Alex first came into contact with Deafblind UK during the COVID-19 pandemic. Struggling to acclimatise to his new life as a Severely Sight Impaired individual, he reached out to Deafblind UK for support. 

“I receive weekly phone calls from a befriender in England and we have built up a fantastic friendship, we both really look forward to our phone calls,” Alex said. “Knowing there is always someone there who can listen and offer advice is invaluable.” 

Empowered by his newfound confidence and sense of community, Alex volunteered as a befriender. “It’s great to be in a position where I can now help support others,” he said.  

To thank Deafblind UK and raise awareness, Alex set out on a sponsored walk from Belfast City Hall to Stormont Parliament and back again. 

“Anything I can do to make it easier for another person makes it all worthwhile.”

On 12th June, Alex, his daughter Jana, and local outreach officer James McVicker met at Belfast City Hall. Mayor Mickey Murray greeted them and wished them luck on their nine-mile sponsored walk. 

Alex encountered one of the most common barriers for people who suffer from blindness: cars were parked on the pavement, forcing him to walk on the road. 

“Parking on footpaths often forces people to walk in the road,” Alex said, “which is particularly dangerous for people who are visually impaired. Also, dogs who are off the lead are genuine trip hazards. Extendable leads also make walking very difficult for me as they get caught around my legs.” 

Undeterred, Alex reached Stormont Parliament. He was greeted by Lee Kane, as well as his Alliance party colleagues Andrew McMurray and Peter McReynolds. 

After discussing policies, the trio headed to Stormont Presbyterian Church, where Alex was previously employed as a youth worker. Minister Albin Rankin was eager to learn how he could integrate inclusion strategies into his congregation. 

Finally, the trio returned to Belfast City Hall to applause from politicians Ron McDowell, Brian Smyth, and Fiona McAteer. 

Mayor Mickey Murray invited Alex and his entourage into the conference room to discuss the challenges facing people who are deafblind. They discussed street parking, the importance of leashes for dogs, and accessible voting, among other issues facing the deafblind community. 

Alex surpassed his initial target of £500 and raised over £1,500 for Deafblind UK. 

“Anything I can do to make it easier for another person makes it all worthwhile,” Alex said. 

Watch below as Alex documents his sponsored walk from Belfast City Hall to Stormont Parliament and back again!

Alex heads off on his walk with his daughter Jana, and local outreach officer James McVicker from Belfast City Hall.

A quick update mid-journey…

They made it to Stormont Parliament!

If you are feeling inspired by Alex’s story and would like to get involved in supporting people with dual sensory loss click here!