After visiting 10 countries to capture stories with dozens of families about children’s palliative care you might think that it would be impossible to surprise me.
Not so. In Greece, I found a story – more specifically, a love story – so remarkable that it touched my heart and affected me profoundly.
For some of you reading this ‘children’s palliative care’ may generate the same reaction it did for me before I started this journey – “whuugh?”
Children’s palliative care is the specialist arm of medicine that cares for families containing children who have been diagnosed with serious, life-limiting illnesses.
Unfortunately, despite all the advances in modern medicine, some medical conditions in children are incurable. In fact, according to the ICPCN there are over 20 million children that could benefit from children’s palliative care but access to services remains an issue. I have discovered that these children and their families need extra assistance to help them make the most of the time they have together – no matter how short or long.
Children’s palliative care teams – like the one led by Danai Papadatou of Merimna, headquartered in Athens – never fail to amaze me. I have now seen teams like Merimna’s at work in Australia, the USA, India, Italy, Russia, Malaysia, South Africa, the UK, along with Jordan, and they contain some of the most highly evolved individuals you’ll ever hope to meet.
I suppose it’s not surprising that such high quality people are the ones choosing to specialise in facilitating the best quality of life for families who, without their help, would be some of the most marginalised and vulnerable in our communities.
And with their help, the families we’ve met demonstrate the most incredible courage, share the most profound wisdom and offer the most unexpected generosity. In Athens, our team’s Greek-Australian translator and sound recordist Stelios (Steve) Kimonides described the experience as “truly amazing”.
Now let me tell you how and why I agree wholeheartedly with him.
On the second day of our Hellenic odyssey, I met a 16 year old named Alexandra. When I met Alexandra, she was competing in a Games Day hosted by her Specialist School. Despite being born perfectly healthy, Alexandra was diagnosed with Kearns-Sayre Syndrome as an infant.
According to the US National library, Kearns-Sayre syndrome is a condition that affects many parts of the body, especially the eyes. People with Kearns-Sayre syndrome have progressive external ophthalmoplegia, which is weakness or paralysis of the eye muscles that impairs eye movement and causes drooping eyelids (ptosis). People with Kearns-Sayre syndrome may also experience muscle weakness in their limbs, deafness, kidney problems, or a deterioration of cognitive functions (dementia).
In recent times, as Alexandra’s condition slowly worsened, she was having increasing difficulty fitting in at school. Due to her medical condition and the related social problems she was experiencing, Alexandra was referred to Merimna – the only free children’s palliative care service in Greece. After consultation with Alex’s mother, father and younger brother Thanosis, Merimna helped the family with medical and social services, which importantly included helping Alex move to a Specialist School.
Unlike her old school – where Alex was soft spoken and withdrawn – at the Specialist School she has flourished and grown to be a vocal leader. On the day we met Alex she was competing in a bowling competition flanked by her teammate Elior. Assisted by a social worker helping her overcome some of her physical impediments, Alex was competing, smiling, laughing and calling out to her friends.
My world was rocked
After the event finished, Alex spontaneously asked to be helped out of her wheelchair to hug and then kiss her teammate Elior. As I photographed the moment, my world was rocked. I realised that I hadn’t expected to find this expression of true love in the face of serious illness. I was forced to question my own prejudices. Had I assumed that teenagers in this situation had any less need, desire or ability to find love than anyone else?
Over the subsequent days, I realised that not only was Alex’s love for Elior real – it was, as Stelios put it, “truly amazing”. I learned that Alex’s feelings for Elior stretched back to the early days of her moving schools. They quickly became firm friends, sharing classes and encouraging one another. Over time, their friendship blossomed into something more.
Regrettably, Elior developed complications related to his own medical condition and was hospitalised for an extended period. This meant that he would need to repeat a year at school. He and Alex would no longer be in the same class. Faced with this, Alex made her decision – to repeat the year as well to stay with her true love.
When you see Alexandra and Elior together they remind you of an old couple who have been happily married for decades. Given that their time together is likely to be shortened by serious illness, perhaps they have decided to skip a few chapters. Elior cracks me up, he’s the perfect gentleman – stoic, protective – his gentle kindness is occasionally betrayed by a mischievous smile that speaks volumes. Alexandra by comparison is confident, loud and extroverted, displaying her love and affection freely.
Moment of insight
In a crushing moment of insight that struck me like a thunderbolt, I realised that against the odds these two teenagers had nurtured a love that most of us would never, ever achieve in our ‘long’ lives.
And then suddenly it all made perfect sense… Alexandra’s love story is a perfect example of what children’s palliative care is all about – helping young people and their families achieve the ordinary (and often the extraordinary) in the face of serious illness.
Regrettably, due to the financial crisis in Greece, Merimna’s programmes are currently at risk of closure. The donations that have previously supported the program over the last 20 years from within Greece are evaporating quickly. As Danai told us, “everyone in Greece has a story to tell – we are all facing hard times.”
Little Stars is a series of films about children’s palliative care around the world. It focuses on the families like Alex’s who are accomplishing the extraordinary in the face of serious illness. It is designed to open the eyes of policy makers, educators, students and parents to the opportunities offered by palliative care.
Support for short films
By supporting the production of two short films (and possibly a one-hour English and Greek language TV programme) including Alex’s love story, we can help Merimna demonstrate the good work that is taking place in Greece and encourage international support for its essential programmes.
If you would like to support this important initiative, please consider making a Contribution to the Little Stars Greece crowd funding campaign at www.indiegogo.com/projects/little-stars-greece/