"Sometimes, real superheroes live in the hearts of small children fighting big battles."
When I was chronically ill, it always meant a lot to me when someone would let me know that they were praying for us.
I think there was something special about knowing that although things were hard, people cared enough to pray for things to improve.
But I think the time I was most touched was when Jake’s parents told me that Jake was praying for me every day.
If you live in Malta, I’d be surprised if you haven’t heard of Jake yet.
He’s a little superhero who has captured many hearts – not only in Malta but also abroad.
And I suppose him praying for me was so special because I knew what a lot Jake and his family go through every day.
And to think that despite all that, Jake and his family were praying for me meant so much to me.
But that’s just what they’re like.
Definitely not the sort of people to wallow in self-pity, Jake and his family spread inspiration, motivation and courage everywhere they go.
Until Jake was 5, his mother Maruska told me that she was always chasing him to get him to eat.
But at age 5 he started gaining weight rapidly and after a very difficult year of several tests – which Maruska describes as a very scary time because they didn’t know what was happening – Jake was diagnosed with ROHHAD-NET syndrome (Rapid Onset Obesity, with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation and Neuroendocrine Tumor syndrome).
This is a rare condition (with less than 100 known cases globally) which causes previously normal healthy children to gain weight and have breathing difficulties, mobility problems and several other complications.
In 40% of cases, differentiated from other ROHHAD cases as ROHHAD-NET, the children also develop tumours, as in Jake’s case.
ROHHAD is a life-threatening and also life-limiting condition, but you wouldn’t know that if you saw Jake.
Now aged 8, Jake is one of the most cheerful, active and determined 8-year-olds I’ve ever met.
The first time I saw him he was running to the finish line, as all his friends from the Malta Youth Triathlon Academy cheered him on.
I recently met him after he had just cycled 40 km with his father.
But unfortunately, Jake’s condition is such that no matter how much he diets or exercises, he continues to gain weight.
I asked Jake what he enjoys doing and in his usual cheerful way, he mentioned triathlon training, drums and school – “a bit of everything”, he said.
Maruska told me he’s now also keen to start kayaking but it was clear from the way she spoke that while they want to Jake to have the best of everything, they also don’t want him to take things for granted.
In fact, his parents Josie and Maruska are as inspirational as Jake is.
Always encouraging others and always cheerful, you would have no idea of the challenges they face every day and of the struggles they watch their beloved Jake face.
It breaks my heart as they tell me how Jake knows he can’t eat the treats and snacks that his friends can, even though he trains so much.
But they explain that they are strong when they see him strong and happy when they see him happy.
And from what I’ve seen of Jake, it’s no wonder then that they are as positive as they are.
His father Josie, an avid triathlete and definitely one of Jake’s heroes, recently completed the Garmin Ocean Lava Malta 113k Triathlon and told me that due to a puncture, he walked for about 3 km because he knew Jake was waiting for him at the finish line and didn’t want to disappoint him.
And to me, this just sums Jake and his family up.
They always remind me that while we have no say in whether life is tough or not, we do get to decide how to act in the face of difficulty.
And the way they do it will continue to amaze and inspire me for a long time.
Jake, you truly are a superhero.