Udi Gluschnaider is running the London Marathon for the benefit of Beit Issie Shapiro, Israel’s leading provider and innovator of therapies for disabilities. In the first of a series of blogs in the lead up to the marathon, he explains why…
Eytan was born on the eve of Israel’s Independence Day. The whole country was celebrating. At the time of the pregnancy, I was finishing my PhD training in Human Genetics, so I was meticulous about the pre-natal tests. Although Israel is the leading nation in the field of genetic screening, it is impossible to test for over 5,000 genetic disorders.
I realised that something was wrong the second Eytan emerged into the world. Relieved after the last contraction, my dear wife Inbar looked at me expecting to see a big smile. Instead she encountered a stunned and worried gaze.
After 15 minutes of googling Eytan’s symptoms, I was the first to diagnose his syndrome. Usually the doctors are the ones that have to carry the burden of informing the family, but unfortunately for me I had to break the news to Inbar. Those first seconds and the long minutes, hours and days following them, changed our lives forever.
Eytan suffers from a rare genetic condition called Rubinstein Taybi Syndrome. RTS is the result of a chromosomal abnormality and there is no known cure. The beginning was very stressful and uncertain. We didn’t know how Eytan will develop in terms of his cognition and motoric skills.
Eytan is now almost six and he is a gorgeous and happy child. Thanks to the devoted care he receives at Beit Issie Shapiro he can now run, swim and communicate.
He has learnt to communicate through Beit Issie Shapiro’s pioneering research using iPads to give a ‘voice’ to children who can’t speak. He loves to swim and was the world’s first child to benefit from Beit Issie Shapiro’s innovation of using iPads in the water to enhance hydrotherapy.
After Eytan was born, I searched for something that would help me keep my sanity and relax a little. Therapists and support groups didn’t seem to help, so I started running. Long-distance running became my therapy and I dreamed that I would one day run the London marathon.
For Eytan, every day is a marathon. Things that we take for granted are a serious challenge for him. Challenging myself through running I believe helps me to assist Eytan to cope with his difficulties in daily life. Together, we are running the marathon of our lives…
To sponsor my run, please click here. Money raised by UK Friends of Beit Issie Shapiro will go towards advancing the charity’s world-first use of iPads in the water, which helps children like my son communicate and benefit exponentially from hydrotherapy.