‘The day we arrived at the stadium and actually spoke to the boys was a breath of fresh air’
Two young football fans who are gradually losing their sight as the result of an incurable condition have met their Hull City heroes. Brother and sister Harvey and Ava are keen Hull City supporters who have grown up in black and amber, attending as many MKM Stadium fixtures as they can.
The pair both live with autosomal dominant optic atrophy disease (ADOA), a rare and incurable condition that affects their vision. Affecting around 1 in 35,000 people in the UK, it is recognised as the leading cause of inherited optic atrophy.
The pair recently spent a memorable day at the stadium, as part of International Day of Persons with Disabilities. In a day planned by Hull City Platinum Partner, Phoenix Building Systems, and the club, the family visited an open training session at the MKM Stadium, where they were invited to meet Head Coach Sergej Jakirović, Assistant Head Coach Dean Holden and the team.
Their mum, Elle, said: “You have your nerve ends towards your brain and theirs are really pale and are dying from the brain to their eyes. Over time, their sight starts to deteriorate, so Harvey has gone from seeing all colour to now hardly seeing any sort of colour. They can’t see sides, above, below and they can’t see so far in front, but they have been brought up to know that just because they have this, there’s ways around it and no one can stop you and you are able to do anything.”
Harvey, now 14, plays football but recently struggled to see the colour of the ball at his local football team due to his condition. Elle explained the challenges she and her children face.
She said: “If they are in a crowded place, they get really overwhelmed because of the fact that their sight is restricted. Footings can be restricted so if there is a kerb on the floor or if there is a dip, they can’t see that. Harvey’s sight is over 75% damaged where Ava has started to regress now.
“He has run into a pole, fences and metal barriers as he cannot see through them because it all blends. But we do try and see the funny side to it because I feel like if you dwell on the negatives, you’re never going to be happy, because you cannot change anything.
“It is really rare what they have that there is nothing for them. There is no cure. We’ve looked as far as Germany to raise money to try and get a stem cell transplant and there is nothing out there for them.
“I think the other barrier that they face is because they don’t look disabled, people do judge us,” continued Elle. “We have a blue badge and people judge us rather than ask us. If they saw Harvey or Ava struggling to see it is not ‘how come?’ They look at them and say that they don’t look like they have anything so why do they need this access? It is exhausting, because you don’t see things like this and people don’t understand it.”
Phoenix’s support as a Platinum Partner backs Hull City’s ongoing work to make matchdays more accessible for supporters with disabilities. With the help of Disability Supporter Liaison Officer Leanne Jensen, their experiences at games have drastically improved to better accommodate their needs.
Elle said: “We spoke with Leanne to be able to move our seats across, because we were struggling as they cannot see what we can see. Now, it is absolutely perfect. Things will change overtime, but we won’t know that until obviously it happens. With Ava, we forgot her ear defenders, and there were ear defenders as we walked in, and the club let us borrow them.”
Phoenix’s commercial director Jayne Wilson added: “We think a lot about accessibility and inclusivity in the modular spaces we create. Seeing firsthand how much confidence it gave Harvey and Ava when they felt supported and included was incredibly moving.”
Elle added: “I want to thank Phoenix so much for absolutely everything, for giving the kids the experience because if it wasn’t for them and Leanne, I don’t think they would have experienced anything like this.
“I tend not to go to things when you see children with physical disabilities and because we have been judged for so long, I have refused, because even though you physically can’t see it, you’re still worried about being compared.
“Hull City have shown the children that they can achieve anything and that they have the full support from everyone there. Having children with hidden disabilities makes you have your guard up all of the time, because Harvey has already been treated so poorly because of his sight by people that do not understand this or have his other health conditions, which has changed his full life around.
“He does not trust anyone anymore due to this and it makes you feel that you have to become his voice and it is a sad world to be in.
“Being a part of the Hull City family has given him that confidence to be able to feel ok to have a condition and to not have to hide it. He is only 14 and it is a lot to deal with. He doesn’t speak and often holds a lot of emotions inside. He doesn’t like to feel a burden.
“The day we arrived at the stadium and actually spoke to the boys was a breath of fresh air, because I could leave him be and he can speak freely of the way he feels. The team, Leanne, and Dean had so much time for Harvey that when we do go to matches, the children really look for him every time. Hull City is the most supportive club we’ve been involved with in all areas; they make the children and us as a family really happy.”
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