Our aim is to complete 1 million steps in 50 days. I will be doing this solo and Niko's big sister, Gran and Aunty will be clubbing together to do thier own million along side me. I will need to complete an average of 20,000 steps a day to achieve this target.
We are undertaking this in order to raise funds for a new specialist pushchair for Nikos. Nikos is currently using the pushchair he and his twin sister had from birth and it is rapidly becoming too small and not suitable for his growing needs for support and safety.
Nikos and his twin sister were born in May 2016 in Corfu, perfectly happy and healthy until about 4 weeks later when it became apparent that there was something severely wrong with our little boy. He had surgery at 8 weeks old for a malrotation of the stomach and intestines. Whilst in hospital in Athens we were told that he was having constant seizures (approx 30-40 a day) after 2 months camping in a hospital in Athens he was transferred to a specialist unit in Bristol, UK. He was an in- patient until nearly Christmas as he needed lots of tests, med's and monitoring to try and get his seizures under some kind of control. We have been here in the UK ever since as he needs constant input from the specialist neurologist. Nikos has severe global developmental delay, he cannot hold his head properly, cannot sit up, has low muscle tone, he is currently suspected to be around 3-4 months old in terms of mental development and is non-verbal.
Nikos has since been diagnosed with STXBP1 a genetic brain condition. There are only about 600 cases of this in the world so he really is our 1 in a million!!
He is an amazing little person who loves people and smiles and laughs all day long. We want to give him the best chances to reach his physical goals and in order to do this, his seating is extremely important, as correct positioning and support in a chair means his bones will be aligned and supported in the right places. On top of this it will mean that he will actually be able to sit up and see the world as we walk along which at present he cannot do as he cant sit up in his current pushchair. The pushchair we have chosen also has a unique lie flat feature which will allow us to do on the go nappy changes......he is too big for the baby changing units now and a mat on a public toilet floor is just not nice! This new pushchair will last until he reaches at least eight years old.
Nikos has to try so hard to do the things that most people take for granted and if he can try that hard then so can we!!!! Please help us get a new set of wheels for our super special little man