Our little Lia is just so perfect in every way

Two-year-old Lia White, from Clonakilty, has a rare condition which prevents her from growing like other children. In Dwarfism Awareness Month, EMMA CONNOLLY talks to Lia’s parents about their “perfect” little girl and how they are preparing her for life’s challenges that lie ahead
Our little Lia is just so perfect in every way
Lia White

LITTLE people can do just about anything an average sized person can do, but sometimes it might be done in a different way.

That’s the heartfelt message from a Cork mum who was told her daughter Lia had suspected ‘anchondroplasia’ just moments after she was born.

The word achondroplasia means ‘without cartilage formation’.

The bones of people with achondroplasia do not grow in the same way as average-sized people, especially the long bones in the arms and legs. The average size of an adult female is four foot one inch.

Eighty per cent of people with the condition are born to average height parents, such as Roisin White and her husband Kevin, who live near Clonakilty — the parents of Lia.

The couple want to draw awareness to the condition, which occurs in one in 26,000 births, and educate the public about it as October is Dwarfism Awareness Month.

Language, Roisin says, is hugely important in spreading awareness.

“It can have a big impact on someone’s self- esteem. In the dwarfism community the word ‘average’ is used rather than ‘normal’ to refer to an average height person.

“The word ‘midget’ is also considered very offensive and ‘little person’ is the correct term to refer to people with dwarfism.

Lia White, with parents Roisin and Kevin.
Lia White, with parents Roisin and Kevin.

“However Lia, like any other little person, would prefer to be called by her name,” added Roisin.

“Dwarfism, of which there are 200 different types, is not an intellectual disability,” she stresses. “It is not a reason to assume that someone is incapable and it is not a disease which requires a cure.”

After a relatively straightforward pregnancy and scans which hadn’t flagged up anything untoward, Roisin recalls Lia’s birth two years ago.

“The first words I said when I saw Lia and before I knew there was anything ‘wrong’ was ‘she is perfect’. I find myself thinking back to those words a lot as that was what she was to us before we knew anything else.

“She was the most beautiful newborn and I could see both of us in her.

“I had not held her yet and the neonatal doctor just said that she suspected that she had achondroplasia.

“We had no idea what that was and she eventually said it was dwarfism. I remember thinking they must be wrong.”

The couple initially decided to keep Lia’s condition to themselves as they didn’t want to take away any of the happiness of introducing their first baby to their family.

Little did they know how much happiness Lia would bring.

“Lia is the first grandchild on my side and she was the second on Kevin’s side, but the first girl.

“We wanted a formal diagnosis first and we believed that it was very important for Lia’s sake to deliver this information in a strong and positive way.

“The unknown was the most scary aspect for us and the medical professionals tended initially to be quite negative. There can be medical complications associated with achondroplasia, but luckily Lia has never had to spend any time in hospital apart from check-ups and is very healthy.

“I remember reading messages from other similar parents who were a few years ahead of us in their journey, saying that in time you will look back and realise there was little to worry about.

“If we only had a crystal ball. Lia’s formal diagnosis did not come until she was four months old so this time was extremely difficult for us”.

At the moment, Lia’s condition does not form part of everyday life, says Roisin, describing her as a typical two-year-old.

“She is stubborn, she has tantrums, she sings songs, she loves books and stories, she loves Peppa Pig, she loves the playground, in particular the see saw, and her favourite food is pasta.

“We of course worry and who knows what the future holds?”

Lia White
Lia White

Roisin admits her daughter is presently living a sheltered life and doesn’t yet know she is any different.

“That is why we are trying to bring awareness to her condition and conditions similar so that we can try to make the community and the world she is growing up in more understanding and accepting of difference,” added the mum.

“As October is Dwarfism Awareness Month, we feel that it is so important to educate people, for Lia’s sake.

“We were unfamiliar with the condition and we still continue to learn.

“We find it strange when people say that we are inspirational and brave as we are just like every other family.

“We have not come across any negativity towards Lia but we know it exists and so we want to break any stigmas surrounding dwarfism.

“Lia can do anything anyone else can, just maybe in a different way.

“Her height is her physical disability but she can become anything she wants to be.”

The couple welcomed their second daughter, Eve, into the world last July and had no fears of the condition recurring.

“It’s extremely rare for us being averaged-sized parents and it was not an inherited condition,” said Roisin.

“Eve was born an averaged-sized 7 pound 9 ounce baby. She is growing at a lot quicker rate than Lia did, which is a very new experience for us.

“Lia, like any other two-year-old, isn’t too bothered with her but loves being the older sister.”

Lia’s main challenges so far have been gaining confidence walking as her balance is not the same as an average-sized baby

Roisin explains: “She has had to work harder to move about the place. Lia is about to take off walking any day though.

“She never crawled as her arms were too short so she managed to get around, very fast, by bum shuffling.

“We work closely with her physiotherpist from the West Cork Child Development Service and with physiotherapists in Enable Ireland who have been amazing and always so positive and kind.

“Lia’s next set of challenges will be when she goes to Montessori and National School. The world was not built for little people so adaptions will need to be made, i.e. be adapting chairs so that Lia will be at the same height as her peers, which is very important.

“Lia will more than likely need steps to reach the toilets and sinks and clothes hangers, etc. We don’t know what adaptations we will need to do to our home yet, but step stools will become a useful tool for Lia to reach simple things like light switches and door handles.”

Roisin and Kevin’s positivity as parents really shines through and they say their most important task is to instil in both their children that they love them for who they are.

“The important fact for us as parents is to instill in Lia that life can be a multitude of things, ugly, beautiful and endlessly challenging, but for us, the most important thing is to instil in our children that we love them for who they are,” says Roisin.

“Life will throw you so many challenges and regardless of how helpful technology will be in aiding Lia in day to day challenges, the main thing is Lia knows we believe in her.

“Being positive for your child is so important too, and when you get to know your child you love them for who they are.

“It is important for us that Lia is strong and confident and believes in herself, that comes from us.

“She will indeed have specific challenges correlated to her height but, like all human beings, we all navigate and adapt.”

The internet has been hugely helpful in linking the family with others in their situation and last year they attended the Little People of Ireland annual convention and met lots of other parents and children from all over the country.

“There is so much support out there, especially with the internet and connecting with other parents in a similar situation who can offer practical advice on how to make life easier for Lia,” said Roisin.

Roisin recalls a Shakespeare quote “Though she be but little, she is fierce” which captures Lia’s spirit.

“Anyone who knows Lia, knows what a bright, intelligent, loving child she is and we are confident she will change perspectives.

“If this article changes one person’s perspective that is amazing.

“We realise we can’t magic away everyone’s ignorance, but we can try. Knowledge makes us all better people.

“Lia is much more than a little person, she is Lia and her difference makes her unique.”

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