Thanks for taking the time to visit my JustGiving page. Here is my story.
July 2013 - an innocent Friday school trip. One of the accompanying parents thought they saw a shadow in my son's eye; and, over the weekend, my husband noticed something during dinner. It didn't seem particularly clear but as he had a routine appointment the Tuesday afternoon following, we thought he would take Ethan along. I still remember getting that phone call from my husband saying "Jo you have to come home. Ethan is blind in one eye."
It turned out that not only did Ethan not have any vision in his right eye (and probably had had diminishing vision for some months), but he had a rare form of childhood cancer, Retinoblastoma. It affects around 40 children in the UK each year, most of whom are under the age of 2 - and nearly all below the age of 4. It can present as either an inherited or an abnormal mutation - and can affect one or both eyes.
The next 12 days were a blur of dwindling hope of recovering Ethan's eye, shock, and upset, as Ethan at age 4 1/2 had his cancerous eye removed less than two weeks after diagnosis. And ultimately, weeks & months later, gratitude that he had not had to go through what so many other RB children do - months, years of chemotherapy only to have severely limited vision.
Ethan has recently been given the all clear - the cancer had not spread beyond his eye and he has the non-genetic version which means his chances are reduced to those of any other average person.
But more so than beating cancer, our story is one of hope and beauty in life. Not only did Ethan beat cancer, he thrived and has grown above it. No-one meeting our son today would know that he has an artificial eye because of the way he acts, talks, and behaves. He's a confident boy who is perfectly comfortable with who he is - and runs around just like any other 5 year old would (except he has to wear sports goggles to protect his remaining 'seeing' eye).
I am proud, honoured and humbled to be running the London Marathon for CHECT, for the support they have given our family in the last year. And because I want to support their work for those families who need more. But mostly because I want as many people as possible to have a better understanding of how amazing children are in the face of adversity. They have an unclouded appreciation of the beauty of life. In fact, on the day we got back from our first hospital visit when we had confirmation that Ethan would need his bad eye removed, as we pulled into our driveway, Ethan said to us "It's been a beautiful day, hasn't it?"
Yes, our son, every day is a beautiful day.
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