Alex’s Mum and Dad’s story

28th May 2016

There was no history of haemophilia in our family so it came as a shock when Alex, at the age if 18 months was diagnosed after a fall and cutting the inside of his mouth and the bleeding did not stop.

It was a weekend we will never forget, the doctor said he could be a ‘bleeder’ which was a strange thing to accept, within a few days of tests it was confirmed that Alex was Haemophilic, classed as severe with 0 to 1% of the clotting Factor VIII.

On reflection, Jan’s motherly instinct with Alex, our first child was telling her that something was wrong, he would bruise easily but she was told not to worry by our GP and the baby clinic. She was even told that she was an over-reacting mother!  Once the shock had set in Jan was making good use of her shoulder pads, the fashion at the time, sewing them into the knees of his dungarees all in an attempt to protect Alex whilst following his every move at close quarters.

Once we took up Prophylactic Treatments life became easier as Alex didn’t suffer as many spontaneous bleeds but still injecting a chubby infant every other day was traumatic for Alex and us as parents.

The next step was for Alex to inject himself which was necessary to enable him to attend school outings and field trips like any other child, this was an interesting time, after practicing on Mum and Dad he actually carried out self infusion at the age of 9, one of the youngest the hospital could remember.

Most haemophiliacs have a target joint where they have spontaneous bleeds and Alex’s was his left elbow so he was often in a sling as a toddler, he also had the occasional ankle bleed so to stop him walking on it he was plastered as if it was broken, he often hid a bleed to avoid the dreaded injection as all young Haemophiliacs do.

School life had its ups and downs, on his first school outing to a farm Alex had a nose bleed on the coach and had to stay behind, we were told early on “Haemophiliacs grow up fast” it seems he did.

He was made head boy of his junior school and then awarded the Public Spirit Award, as the headmistress told a story of Alex on crutches helping a prefect with his duties. It is so important to celebrate achievements like this as they can often feel miserable when they can’t take part in everything.

The Royal London Hospital visits were crucial in understanding the condition, learning the do’s and don’ts helped us live with the condition. We wanted to know everything from a medical perspective but also how to support Alex’s health and wellbeing, and that’s when we were told about the importance of physical exercise.

We began swimming, he joined the Chelmsford Swimming Club which included many early morning training sessions before and after school; this built up fitness and lung capacity. It was an easy transition into cycling and it became clear that he had a talent!

Alex joined some of our family friends on a mountain biking trip and we were thoroughly worried but wanted him to try new sports and encouraged him to manage risk carefully. Eric, Glen and Jan Smith who had raced for many years then took Alex Time Trialing; it wasn’t long before he joined the local Maldon & District Cycling Club. He began making a name for himself and in his first major event at the age of 14 he finished a close 2nd out of over 100 young riders at the National GHS School boys finals and from then went on to win numerous Junior Championships.

Our advice to parents of young haemophiliacs is to encouraged physical activity as much as you can as it help build strength and promotes healing. Although its difficult you must let your child enjoy their young life and taking part in positive activities builds their self confidence and self esteem which is crucial for their health and well being.

Jan and Phil Dowsett are proud to be mentors for Little Bleeders and enjoy helping other parents of young haemophiliacs. If you’d like to know more, contact us here.

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