There is a Chinese proverb that says something along the lines of:

“Life is here to teach you lessons, and if you don’t learn them, it will send you more lessons…”

Given that I’ve spent the last 30 years of my life (a sad realisation, but inevitable when you realise your eldest child has just turned 40!) training people on communications and how to get your messages heard, it seems that Life is once again presenting me with a lesson that I have to learn.

Just over four years ago my stepdaughter had a beautiful baby girl called Lola, but we soon realised things were not all in order (quite literally, but that’s genetics for you!) at about 10 months old when we started investigating the possible connections between some of Lola‘s particular quirks: the eye fluttering thing that she does, her fascination with water, the digestive problems and a respiratory challenge …what could it all mean? Soon, with the help of our local hospital, the spectacular Evelina children’s hospital genetics team up at St Thomas’ and even one of the top genetic research laboratories in Manchester, we had a diagnosis of Angelman syndrome. It’s a very rare condition that affects one in 20,000 children and means they will not develop the same way as you or I. Apart from the epilepsy (she has dozens of tiny seizures, every hour), which often prevents her sleeping, and the need for little sleep (which causes mayhem for mum and dad), the digestive issues, dyspraxia (arms and legs sometimes have a mind of their own) on top of all this…

That tiny, unfair, and microscopic spelling error in one gene (UBE3A) means that she’s unable … to speak.

But, oh boy, she can still communicate!

And the lesson for me is that over the last two years I have learned to appreciate how well someone can communicate without words. And for me it’s a challenge as words make up a large proportion of what we do in the industry – advising, explaining, asking questions – all of this requires words and verbal language. So I have found myself looking very carefully and critically at how somebody can communicate without words. The methodology has been taught (and misunderstood – Mehrabian’s work!) since people started saying that over 50% of the message is body language, but of course Lola’s body language counts for everything. You learn to watch the eye contact, the hand movements, the body gestures and realise just how important all that is, especially for her as it is all she has.

We have discovered AAC (Advanced Augmented Communication) devices, that will help a child (or adult) communicate by creating sentences from pictures that have been cleverly arranged within a book or ipad. It requires intelligence to find the pages you need and find the pictures and then point to them – all in the right order and this is a challenge when you have everything else going on.

So over the last two years I’ve been undergoing quite a thorough examination of what is possible, how much tenacity you need to keep going in the face of seemingly overwhelming adversity and the rewards that it brings when these children actually pull through and demonstrate just how smart they are. For Angelman children life is a constant daily exploration of everything new and they can repeat their learning with the same degree of joy each day – which is infectious! As she gets older her falls happen even faster and if you are not behind her and holding on it can be dramatic – at times she might just drop at the table for 2 seconds while eating – jump up, rub her head and wonder what just happened.

So it’s a journey and her care is complex and at times, expensive so this Friday we are hosting a quiz night for over 100 people in Milton Keynes to see if we can raise enough money to buy Lola a car seat and to give her as much support in her communication as possible with a specialist in AAC.

Car seat, I hear you say? There’s one on eBay for 50 quid! Or you could buy new at Halfords for £400… But no, dear reader, the kind of seat this child needs, requires scientific positioning so that you can put the child in the seat – while facing you, as their arms and legs are going all directions, bolt them in safely and then turn them 90degrees  and lock them into position to be forward facing. Yes, it’s probably three or four times as expensive to make, but the manufacturers manage to charge £2,500 to buy one but it will last Lola until she is 11. This keeps her safe in the car while she goes to physiotherapy, speech and language and also to a special-needs school that she has just started, who are working hard to build the relationship with her and to build the trust between her and a one to one teacher that will mean she can thrive in her own way over the next few years.

As parents, when children are born (which is a miracle in itself) we always say “I don’t care if it’s a boy or a girl, just as long as it’s got 10 fingers and toes and is healthy“.

We have found there’s actually more to it than that because what we really want is a child that has every genetic bio marker in the right order. Lola has a tiny misstep in just one gene and has a significant impact on her and our own lives and the video below highlights just how much she can do and the joy she brings us all. I have no doubt she understands so much more than she can communicate (not just optimistic thinking here, it’s what all the research says) and I wonder how much we all keep to ourselves? Seeing and hearing it all but not sharing just yet.

We created this video to support the (Sellout!) Quiz night in 2025 – and although you can’t be there – do feel free to donate here and we will keep you posted on her journey – hopefully in a nice comfy Car Seat!