6 years old
The United Kingdom
Warrior #211
“It’s quite something to sit down and really think on things, to let all the emotions flow through as you do. We rarely take time to reflect on our journey because we are just focusing on what the day needs and where the hope lies, aren’t we! Writing Hakan’s Warrior Story has been therapeutic.” – Catherine Hughes-Ertrugrul, Hakan’s Mom
We are the Ertugrul Family, hi! We are a mixed bunch from South Africa and Turkey, currently living in the UK after many years in the Middle East.
When Hakan was slumping over in his baby highchair and not able to sit independently at 6 months old, we suspected something wasn’t right as he seemed to be moving much slower developmentally than our two older children had. Having just made an international move from the Middle East to the UK in 2019, everything about the system in the UK was new. Whilst well-intentioned, we soon learned it was fraught with long waiting lists and little synergy in the disability sphere. The journey quickly taught us not to take ‘no’ for an answer and to absolutely trust our gut to do what we think is right for Hakan.
Hakan is 6 years old now, with the intellectual capacity of approximately a 1-year-old. His diagnoses started vaguely with global developmental delay (and the illusion that something might miraculously align in him), then hypermobility, hypotonia, sensory processing disorder, myoclonic epileptic seizures (diagnosed at 2yo), and autistic traits. He is non-verbal, not able to chew or feed himself independently yet, and has glasses for eyes that otherwise wander.
A ‘Person of Determination’
In Dubai, they don’t call individuals with a disability, disabled. They call them a ‘Person of Determination’. And that …is our Hakan. He loves fiercely, he laughs and smiles about the small things in life, he works tirelessly at therapies thrust upon him. He absolutely loves the outdoors, aeroplanes, helicopters, wind turbines, nursery rhymes, and lots of tickles. He makes progress that surprises teachers and therapists around him all the time. When we have been told he couldn’t or didn’t meet the baseline criteria for an assessment, a therapy, an intervention, we have found a way ourselves. He has shown that he could in so many areas. His progress is slow, but it’s progress. He has proven time and again, he is more than what he seems.
Opportunities
When we GIVE him opportunities, he thrives! This has been the biggest (although seemingly obvious) revelation for us. Where non-Syngapian children may naturally explore and discover, we need to bring the discovery to Hakan and help him mentally map it. Given the ‘watch and wait’ culture for disability in the UK, this set us on a course of discovery entirely our own, one that became international. ‘Hakan’s team’ of therapists who help us are in Turkey, Ireland, Dubai, the US, and the UK. Thank goodness for the digital age!
Some of our golden nuggets of discovery along the way have been:
- The existence of a specialised Occupational Therapy approach – that is, with sensory integration. This has helped us understand the WHY of Hakan and HOW his brain is processing things. It has been the foundation of everything for us in understanding and working with him, to help him.
- The power of music (Listening Therapy) and its ability to reach his brain in ways speech has not been able to as effectively, opening him up to more understanding.
- The discovery of the Neuromovement approach (Anat Baniel) has helped us understand the brain-body connection and how to help Hakan understand his body.
- The discovery of Norman Doige’s book; The Brain’s Way of Healing which introduced us to the idea of the plasticity of the brain and so much hope there in.
Finding the SynGAP Research Fund
And then came the SynGAP Research Fund. After 1.5 years of waiting for the results of genetic testing, we got the call from our geneticist that delivered the news of Hakan’s SYNGAP1 diagnosis. He was 3 years old at the time, December 2022. We cried hard tears of pain and relief in equal measure that day.
Our very first search as we dove into understanding SYNGAP1, brought us an organisation that would give us the biggest blessings we could ask for…a community and hope for the future. Not only people walking the same walk, but a group of warm and incredible parents fighting for a cure. There is no exaggeration in saying, that gave us a silver lining to an otherwise devastating moment in our lives.
The struggle to give Hakan his best life is, without a doubt, a daily one, but with all these blessings, unexpected angels that pop up along the journey, a supportive family, two incredible, empathetic siblings, and a bit of fitness training for ourselves (our kids are strong!!), we have much hope for a positive future!
We can do this!
