Ain’t no mountain high enough for fundraising father
17 November 2020
Father of two Ales Mydlar climbed the tallest mountain in Britain twice in one day to raise money for Evelina London, who have been looking after his son Maxim since he was born.
Ales Mydlar had originally planned to climb Mont Blanc in the French Alps, but after the pandemic put his travel plans on hold, he opted to scale a mountain slightly closer to home.
After setting his sights on Ben Nevis, Ales decided to make the 1,345-metre climb to the summit twice in one day, via two different routes, to match Mont Blanc’s climb altitude gain.
Completing the gruelling mountain adventure, which covered 33km in distance and 2.8km in altitude gain was a mean feat. Ales had to get up at 5am for his first trek up Ben Nevis via the challenging Carn Mor Dearg Arete route.
“After I’d finished the first climb up the mountain and got back down, this time via the Mountain Track, I started to think ‘why did I agree to do this again?’ but I’d committed to it so I knew I had to finish,” says Ales.
Thankfully, for his second climb of the day Ales had friend for moral support. Having good company and knowing the beautiful views awaiting him at the summit made the second climb worth it.
“People tend to underestimate how spectacular the mountains in the UK really are. When you’re on the top, turn around and all you can see are incredible hills in a 360-degree scenery stretching tens of miles out, it’s so beautiful and unique.”
Knowing that he was able to enjoy the outdoors after several months in lockdown, while simultaneously supporting a hospital that had done so much for his son added to Ales’ achievement.
“It felt incredible to be pursuing my passion for hiking whilst giving something back to everyone involved in Maxim’s care over the years,” he says.
Ales’ fundraising journey was inspired by the care his son Maxim has received at Evelina London. Maxim started to have a seizure when he was just a few hours old and was rushed to the hospital’s neonatal intensive care unit.
“It was extremely scary,” says Ales. “Maxim started turning blue, as though he was suffocating. We were so worried he might not survive.”
Tests confirmed there was no major health condition that caused the seizure, and after further investigation and seizure treatment from Evelina London’s neurological team, Maxim was eventually discharged.
But at two-years-old Maxim was referred back to Evelina London when his growth began to slow down. It was then doctors diagnosed Maxim with hypochondroplasia, a rare form of dwarfism.
Hypochondroplasia is caused by a gene defect that causes a disproportionate shortening of the arms and legs. The mutation can also cause seizures in babies, like Maxim experienced. As the condition only presents physically when a child begins to grow, it is not easy to diagnose early.
Now 12 years old, Maxim doesn’t let the challenges associated with his diagnosis stop him from pursuing his passion for sports.
“Maxim is the most incredible 12-year-old. He is super talented and so driven in sports. He plays football for his school team as well as for Highbury Wolves, his local U13 London youth league team,” says Ales.
“Despite the fact the other players are much taller than him, he doesn’t let it hold him back. He played his debut match for his under 13s team recently and scored a goal. He’s also one of the fastest sprinters in his school. I am in constant awe that Maxim more than keeps up with his classmates.”
Maxim has been under the care of the skeletal dysplasia team at Evelina London’s specialist hypochondroplasia clinic since he was first diagnosed with his condition. There, doctors not only monitor Maxim’s growth and ensure he isn’t in pain, but also offer psychological support.
“The psychological care is so important,” said Ales. “It’s not easy for children like Maxim to grow up being a little different to their classmates, but the support for their mental wellbeing helps them to better cope with the challenges their condition may give them.”
The care that Maxim and the rest of his family have received from Evelina London is the reason Ales felt compelled to give something back and take on his mammoth challenge.
“It really is one of the most difficult life situations when your new born child is in trouble,” said Ales. “Looking back, I have so much appreciation for how kind and understanding everyone at Evelina London was, and still is, to help get us through the tough periods.”
The team at the hospital are grateful for his efforts to not only raise money for the hospital, but to increase awareness of Maxim’s condition.
“The children who have hypochondroplasia can go through a lot, from pain in their limbs, to coming to terms with the fact they’re not growing at the same speed as their peers,” says Dr Melita Irving, consultant in clinical genetics at Evelina London. “It is important to make more people aware of the condition so we can learn more, make progress and improve care for those that have it.”
This is a key motivator for Ales, who above all wants to help other families who need the hospital’s specialist support.
“Evelina London combines world class medical facilities with heart and kindness,” he explains. “I hope that with mine and other fundraisers’ contributions, even more resources will be available, so that other families are able to benefit from it for many more years to come.”
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