Why having a rare child has helped me be a better entrepreneur

Today is Rare Disease Day. Held each year on the last day of February, this is to raise awareness of rare diseases, help understanding and improve access to medical representation.

My daughter Chloe has Cohen Syndrome, a rare autosomal recessive genetic condition that, for her, presents itself as severe learning difficulties, retinitis pigmentosa, gross and fine motor skill challenges, hypotonia, microcephaly and curvature of the spine... she's also very funny, incredibly charming, and the most stoic person I know.

Having Chloe changed many things for me including my career path. If you don't already know, she's the inspiration behind doqit. I was having my coffee this morning, giving gratitude for my girl, and I wanted to share why a rare child is a blessing, not a hinderance, and what Chloe has taught me on my journey to being a better entrepreneur.

How do you eat an elephant?

The red book, nursery, paediatrician - it all felt very target driven. Sitting up, stacking bricks, walking. Chloe was smiling, she was happy; but I knew we had targets. I wanted her to achieve a target, and I wanted her to want to achieve a target. But how... the same way you eat an elephant - one bit at a time. We never stopped focusing on the end goal but we got there by breaking every task into small component parts; like stacking bricks - recognise the bricks are there, touch a brick, pick it up..... and always

celebrate small wins

Celebrating small wins helps keep your 'eye on the prize' and safe knowledge that the end goal is in sight.... Encouragement, loud cheering and whooping over the years has kept momentum going and belief that 'well if we've done that, we can do this'! However, sometimes things don't go to plan, so

if it doesn't work, try a new way

Just because it's worked for someone else, and it's documented as 'the best way', doesn't mean it will work for you. Having a long career in sales, I know the value of flogging a dead horse - nil! Going back to the bricks... one of the reasons Chloe couldn't stack the bricks was because she couldn't see them. I can hear that penny drop! Sometimes, it's not until years later that the reason something hasn't worked is uncovered - Chloe was about ten before we knew she had little sight... Thank goodness, we didn't wait to try new ways until then. But all of this takes

patience

In the words of Gary Barlow sometimes we 'just need to have a little patience'. Patience is hard. We live in a world where everything is now, disposable, and so little joy. Chloe's condition has demanded patience, and this has taught me that this much needed time of reflection brings joy and a depth of understanding of what has been achieved, and what has to be done next. Like any journey though, we needed to

listen to the experts

There's never been so much available knowledge as there is today; and there will be more tomorrow, and the day after. I remember asking Chloe's Geneticist why he'd chose that area of medicine. He believes that in his lifetime it's the area where most progress will be made and is now part of the 100,000 Genomes Project at Oxford University - mindblowing. How lucky we are to have so many dedicated experts around us. People who take a strand of expertise and make it their life's work, who are willing to share their knowledge and time. All we have to do is

ask for help

People are busy. Don't confuse that with unwilling. People are generally very kind and want to help. Know your limits. Having children - with or without a condition - is exhausting. The juggle of life, work, school is overwhelming. So don't try and do it all yourself and be a martyr to the midnight oil, just ask. And, finally....

NEVER GIVE UP!

I'm not talking about flogging the horse.... I'm talking about being fearless in your quest to know more, learning from the research, embracing the experts, rallying the supporters and knowing that the prize your eye's on is there for the taking.

So, thank you my darling Chloe for helping me on my journey to being the best I can be, for teaching me more than I could ever have hoped to learn and making me proud every day.

#rarediseaseday #entrepreneur #journey #femaleleadership #learning