shining light | 

Adoring Tallaght mum insists daughter’s genetic disorder is not going to hold her back

‘With our support, Frankie will be able to do anything’
Sera King with her daughter Frankie at the Down Syndrome Centre in Sandyford, Dublin. Pictures: Frank McGrath

Sera King with her daughter Frankie at the Down Syndrome Centre in Sandyford, Dublin. Pictures: Frank McGrath

Denise Smith

Frankie King is a vivacious, fun-loving three-year-old. She adores music, hugs and meeting new people - she is unequivocally, the shining and constant light in her family’s life.

Yet, some people cannot see past the genetic disorder she was born with.

Frankie’s mum, Sera King, however, does not want people’s pitying glances or sympathy. She wants you to know that Down syndrome is not a sickness or a disease. It is not the defining marker of her little girl.

“She is absolutely nuts, she’s such a social little girl. She loves men but you will always get a smile out of her regardless of who you are. She loves music, her favourite songs are Jason Derulo’s.

Music is going to be what makes her walk, she stands half way up now and shakes her bum,” shares the adoring mum who lives in Tallaght with her husband Will and their four children.

“I hate when people say, ‘I am sorry, it must be very hard having a child with Down syndrome’. No, it’s not, the only thing that is awful is the lack of services.

“I genuinely believe that if a child with Down syndrome got the care and services that they needed without having to wait ridiculously long times there would be a smaller developmental delay, if any, between a child with Down syndrome and a typical child.”

Sera King with her daughter Frankie. Pictures: Frank McGrath

Sera King with her daughter Frankie. Pictures: Frank McGrath

This is exactly why the services and supports provided by the Down Syndrome Centre are such a lifeline for so many families who feel left behind.

“Nobody will ever understand how much the Down Syndrome Centre does – the sun shines out of the roof there.

“Even coffee mornings are a life line. I have met three families; we’ve gone to family parties and even Will gets the opportunity to talk to other dads who are going through what we are. We would be genuinely lost without them. I would be chained to the Dáil without the centre,” explains the 37-year-old.

“I think Kids that have extra chromosones or genetic problems, they should be put on a pedestal and worshipped because they have battled to survive.”

When Sera was 14 weeks pregnant with Frankie, she and husband Will were told their baby would most likely die in the womb or shortly after birth.

“The consultant confirmed that on the nuchal fold the measurement was larger than what was considered normal. She told us that it was most likely an indication of a baby with a fetal abnormality.

None the wiser as to what that really meant I asked ‘such as?’ And she listed off a few such as Edwards syndrome, Turners syndrome, Down syndrome.

She went on to say that some of the abnormalities are not compatible with life and usually do not survive outside the womb. She said that it was quite possible I would miscarry. It was devastating.

I said, what is the most likely scenario and she said, ‘Down syndrome’ and I said what, ‘that’s not even bad’. I was crying at this point I thought our baby was going to die.

“I began reading more into and realising that a lot of babies can die in the womb or after they were born. They asked us did we want to travel and I said no.

“I had a needle put in my stomach to get samples to confirm the diagnosis and I still had people say, ‘they told my cousin the same and her baby was fine.’

“What I wanted people to know was this is our child and we accept her as she is. Our biggest thing was that our baby would live.”

At just four months old Frankie required open heart surgery.

“She was born with the most common congenital heart condition that kids with Down syndrome have. After heart surgery she needed a feeding tube because her swallow wasn’t working.

Once she got the feeding tube it was like she stopped developing, she wouldn’t roll and she would scream when she went to physio. For a child that doesn’t cry when they were sick we knew there was something wrong.

We went to the PEG nurse and she said we will try another tube with no balloon in it because the tube is held in with a balloon of water in the inside. Since it was replaced it worked. She began to roll again, so it was a whole year where she didn’t develop her mobility.”

Thanks to the Down Syndrome Centre the tot receives Speech and Language Therapy, Occupational Therapy and Physiotherapy.

“I know Frankie with our support will be able to do anything she wants to. She is thriving now because she has access to these supports - supports no family should have to fight for.”

“I think that people perceive that people with Down Syndrome are limited in what they can do or achieve - they aren’t at all, they can do everything anyone else can. They may need more time and may learn in a different way but they are very capable.

“People think that our lives are worse off, we can’t imagine our life without Frankie.”

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