Alex and Samira's Story
Alex is an active seven-year-old who is full of smiles and laughter. His condition is genetic and life long. He has a deletion, duplication and translocation of various chromosomes. There is no one else with this condition so Alex is a SWAN (syndrome without a name) this has led to epilepsy, reflux and severe developmental delay.
He cannot walk, talk, eat or drink. He is fed and via a tube into his nose. He is considered “life limited,” something that as mum I can now say. Alex has spent around 9 months of his life in hospital, one of his condition called apnoea means he stops breathing on a regular basis and he has been resuscitated by the Little Miracles team many times. Alex also has complex seizures meaning that he will have a fit roughly every 10 minutes. His type of epilepsy is drug resistant and affects his whole brain. He is not a candidate for surgery and there is no treatment. All we can do is make him comfortable.
Alex is a poorly little boy, but he is also a little boy who, thanks to Little Miracles has friends – and currently is particularly fond of playing Goat Simulator with his friends.
Little Miracles came into our lives when Alex was four months old. He had not reached his milestones and was seriously underweight. I had just been given the news that the doctors suspected a syndrome of some kind but were not sure until the results from genetics came back. Each time he ate he choked, vomited and cried. Alex was also having constant jerks which made him cry. I later found out this epilepsy. I felt alone and isolated. We were recommended to visit Little Miracles by a nurse at the hospital and we have never looked back.
I remember walking through the Little Miracles door for the first time and being met by Michelle King. You just knew she understood what I was going through without me having to open my mouth. She took Alex and gave him a huge cuddle. Being a special needs parent you will understand how this is worth a thousand words. Generally people will stare, look frightened or would ask ‘what’s wrong with him’. For someone to just show him the unconditional love every child deserves was just priceless.We discussed his condition and she just reassured me that everything was going to be ‘alright’. I was not alone and were now in a family that had similar experiences and genuinely knew what I was going through. We finally had a place where we belonged.
As I adjusted to having a disabled child, the constant hospital visits, missed milestones, and stress of what the future may hold I knew I was not alone. Always greeted with a smile and the promise of a cup of tea, Little Miracles became a life line I could not imagine life without. It’s not just a place where we can go and meet up with similar children and parents…it’s an extended family where life can continue with hope for the future.
Alex spends a lot of time in hospital. This is usually due to being ambulanced in for life threatening situations. The Little Miracles Facebook page gives you 24 hour access to other parents and support staff at the charity who will always encourage and give you strength through the most stressful of times. Maybe even bring you in a bag of sweets or pop in to decorate the hospital room as was the case when we were stuck in isolation on two of my son’s birthdays. We have been ambulances to hospitals far from home but the Little Miracles family are only a mouse click away spurring us to ‘hang on in there’.
As time has gone on and Alex has got older I found myself scared to take him on any kind of holiday as the thought of him stopping breathing or being ill away from home was too much to bare. Little Miracles stepped in and sent me, Alex and my mum on a caravan holiday to Cromer. This not only made special memories we cherish but gave me the confidence to take him to away on a regular basis. This gives us something to look forward to on the days where things are really tough. They have given him birthday parties both in hospital where they snuck in and decorated our room and also at the centre where he could invite his friends. These things are what others may take for granted but they have been such major events for us.
Before I had Alex I had a long career in clinical research. This is something I have missed since he was born but the commitment to a full time job and the travel it required seemed so out of reach. Little Miracles has helped support me in ways I cannot possibly explain, they have helped me with training and education, with my mental health, they have been with me every step of the way over the last 7 years.
So when people say ‘what has Little Miracles done for you’? I would say ‘how long have you got’ or make them a cup of tea just and give them a big smile just like Michelle King did on my first visit.