Natasha, Gary and their four-month-old son Alexanderattended one of the Haemophilia Society’s regular Newly Diagnosed Weekends which offer specialist support and advice for families with children aged five and under.
Here Natasha describes the impact the weekend has had on her family.
“The whole weekend was amazing and overwhelming all at the same time. For us, the life experiences that we heard about from members of the Haemophilia Society were one of the most inspirational aspects of the weekend.
“I have always had quite a positive outlook, but I left feeling even more supported and now have a new network of families who understand what we’re going through.
“We met other parents and got really useful information from health professionals, including a social worker, nurse and a physiotherapist. It was comfortable and relaxed and we learnt things that will be invaluable to us.
“Alexander is four months old and I’m still processing his haemophilia. He was diagnosed when he was five days old. I had no idea I was a carrier. It was a very intense time – we were just learning to be parents and didn’t expect to be dealing with anything else. A paediatric doctor came to tell us the news at 1am. I remember hearing ‘blood not clotting’ and ‘haemophilia’ and I didn’t have a clue what it was.
“A mum I’d met whose son also had haemophilia told me about the Newly Diagnosed Weekends and when I phoned to find out more, I was offered a place.
“I hadn’t ever left Alexander with anyone else, and I was nervous about leaving him in the crèche which was organised by the Haemophilia Society during the weekend. I needn’t have worried – the staff were great and knew all about haemophilia and Alexander was really happy there. That meant I could relax.
“I really enjoyed chatting to the other mums. We realised that we all shared an element of guilt that we had passed this disease to our sons. Even though we knew it wasn’t our fault, it was good to know that I wasn’t the only one who felt like that.
“It was fantastic to hear from two of the Haemophilia Society’s Youth Ambassadors who were in their 20s with severe haemophilia and leading normal, active lives.
“We were able to ask them all kinds of things about growing up with haemophilia – such as how they coped with bullies, because sometimes kids can be cruel when children are a bit different. Their anecdotes showed us that haemophilia didn’t control them and that they wouldn’t have got to where they are without it.
“There were parents with children the same age as Alexander, but also ones with children who were a bit older and at different stages, so we were able to get advice from people who had already experienced what we are about to go through. I was worried about my son bashing into things as he gets more mobile, but the other parents reassured me that it was ok to let him get on with it and to accept the fact that he was going to bruise.
“We left the weekend feeling quite exhausted at all the information we’d taken in, but we also felt much more peaceful about Alexander’s haemophilia. It doesn’t feel as if we are alone. We’re surrounded by friends and professionals who understand, which is really reassuring. ”