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Ethan was born in 2010, making him almost 7 years old. We live in Somerset in our wonderful new adapted bungalow. My name is Naomi and I am Ethan's mummy, there's Steve, Ethan's step daddy and Dakota, Ethan's step-sister. Ethan's daddy Ashley is also a big part of Ethan's life, along with his partner Rachael.
Our life is pretty hectic and very hard at times, our story is definitely a rollercoaster one. This is due to the fact that my little hero has a rare genetic disorder - ARX. This condition affects his development and at the age of 7 he is still at the developmental level of a 6 month old. Yet Ethan is the happiest child I know. He has a smile that will melt anyones heart and his infectious laugh fills any empty room.
The first six months were some of the hardest we’ve had to endure, not knowing if we were coming or going from the hospital and trying to come to terms with the fact that we might lose our little man. But he did pull through and we are so blessed to still have him in our lives.
It took two years for us to get the diagnosis of ARX. A rare genetic disorder which causes epileptic seizures and developmental delay.
At 2 and half Ethan's development was very limited. He couldn’t fully support his own head, sit, crawl, walk or play with Toys properly.
Throughout his life, despite having regular seizures and many bouts in hospital, Ethan smiles and laughs all the time. He is a joy to be around and lights up my world every day.
Every year Ethan continues to learn so much, increases his awareness and becomes stronger and understands more every day. Ethan can now communicate well with his eyes, can stand for longer periods of time in various aids and even managed to walk down the aisle at our wedding in his walking frame. Ethan is able to understand some symbols and pictures and is also able to understand his routine.
Life is still tough though, and this story only gives the slightest fraction of what life is like with ARX. We continue to attend appointments on a very regular basis and are going through various tests and procedures to try and enhance Ethan’s life and abilities.
Ethan continues to show us that no matter what he goes through he goes through it with a smile on his face. We are incredibly proud of all he has achieved. I’m also incredibly proud of his little sister who has been an absolute blessing and reminds us every day how fortunate we are to have such a loving and funny little girl to get us through all the tough times. She is always helping with Ethan's care and helping to make him smile when he's sad.
This has been just a short snippet of our story, but we hope it has given you some insight into our life. You can find out more by reading through Our Blog and be kept up to date by joining Our Newsletter and Following Us On Facebook.
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