Walk 300,000 steps in March

I’m taking the challenge to walk 300,000 steps in March to raise money for the Haemophilia Society, which has recently become very close to our hearts.

Our story:

My son, Ben, was born on 4th December 2020, and the first 3 weeks of his life were completely magical. Completely normal. He came into our lives and instantly stole all of our hearts. Watching this budding relationship between Ben and my oldest son, William, blossom was so beautiful to watch, and myself and my Partner Ed felt so fulfilled in our new role as parents to 2 beautiful boys.

On 28th December, I noticed quite a substantial bruise to Ben’s right lower leg. It wasn’t a ‘normal’ bruise that you would expect to see from an injury, and how could it be? He was 3.5 weeks old. He wasn’t mobile. He was a newborn baby. I immediately panicked and took Ben to the Doctors. The week that followed was any parents worst nightmare. Because Ben wasn’t mobile and I couldn’t explain how this bruise occurred, the baby bruising protocol was followed - We were immediately shipped to Southampton hospital where we were met by social services, 2 police detectives, 2 doctors and a nurse. We were under suspicion for causing deliberate harm to our precious baby.

After initial questioning and examinations, myself and Ben were transferred to a ward where I was to be supervised by nurses at all times, and William was immediately put into the care of my mum until investigations were complete. Why wasn’t we allowed unsupervised contact with our children? We knew know much we adored our children, and that what we were being suspected of couldn’t have been any further from the truth, but we had to convince everyone else. We were innocent, but we felt like criminals. And criminals of the worst kind.

Whilst I was in hospital with Ben, more bruises appeared all over his body. He now had bruises on his tummy, on his arms, on his wrists, on his back. Everywhere. Everyone told me what good news this was. How because these new bruises had appeared whilst I was being supervised that this meant there was now more reason to do extra medical tests. Good news?

I had to watch my poor, innocent new born baby having to be prodded and poked, be taken away from me for X-rays and CT scans to be completed, doctors and nurses trying to take multiple rounds of blood. That week is a complete blur. I was living in a nightmare.

After all tests were completed, we were sent home (to be supervised at all times until we had results back).

On 5th January 2021, we finally got some answers. Ben was diagnosed with Haemophilia B, a rare bleeding disorder, which causes easy and spontaneous bleeding and bruising.

I could go on about how traumatic everything had been for us all, how much we worry every single day about our baby’s health and his future. But, the help and support we’ve received from The Haemophilia Society is really helping us to recover from all of this. We are part of a network of people who all suffer from Haemophilia, we speak to people, ask questions, get support and advise. We have spoken to parents who have also had to go through this process before getting their children’s diagnosis. Ben has a Haemophilia specialist nurse who we can call with every single worry or question. Without the Haemophilia Society, I don’t know how I could have coped with the news that my baby has this life long condition. And although I still worry, everything seems a little less daunting.

Coming from someone who struggles to get out of her pyjamas until 10am and participates in absolutely zero exercise, this is going to be a real challenge for me. But every day, myself, William and Ben are going to get out the house and walk 10,000 every day throughout March (well I will, Ben will be in the pram and I’m not sure how far William will get before he has to join Ben in the pram) to give something back to this amazing charity. I will be so grateful for anything you can donate.

Thank you!

Lucy x

#bruisednotabused #haemophilia #haemophiliac #rarebleedingdisorder #1in20000

More information about The Haemophilia Society: We are the UK-wide charity for everyone affected by a genetic bleeding disorder; a community of individuals, families, healthcare professionals and supporters. We are here for people throughout their lives, wherever they live in the UK. Whether your child, a family member, a friend, or yourself have a bleeding disorder, we are here to help. We could not deliver this level of support without the generosity of our supporters; people just like you.