Life & Style | People

My Down's syndrome daughter is a model

When Helen Shiers gave birth to a baby with Down's syndrome, she decided there would be no stopping little Thea

  • As told to Julie Cook for Friday magazine
  • Published: 00:00 June 29, 2012
  • Friday

Thea and Rowan Shiers
  • Image Credit: Supplied picture
  • Rowan and Thea modelling for Boden.
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The paediatrician popped his head around the curtain surrounding my hospital bed and asked if he could sit down. I smiled, my gaze only momentarily leaving our new baby girl cradled in my arms. My husband Andrew and I had named her Thea. We already had a two-year-old daughter, Rowan, who was just as obsessed with her little sister as we were.

I'd had Thea by Caesarean the day before and was still in a tired haze. Despite the soreness that seared regularly across my tummy, I'd never felt so happy. We had our family - our two little girls.

Then the paediatrician began speaking and I noticed he looked concerned. Some words filled the air, but they didn't quite register. He finished speaking and I was so stunned I had to ask him to repeat himself.

"I'm afraid Thea has Down's syndrome..."

The words hung in the room. I looked at Andrew, both of us speechless. There must be some mistake, I thought. Thea didn't look like she had Down's, and I'd had a nuchal fold test when I was pregnant with her and nothing untoward had been found. We had no history of Down's syndrome in our families. But the doctor was insistent. He'd noticed she had signs of lax ligaments in her joints when he'd gone through the routine tests and had carried out a blood test. It was definite.

I held Thea tighter in my embrace. Tears burnt and my lower lip trembled. My first thought was utter panic. What will Thea do in her life? What will happen when we're gone? Who will care for her? Why had this happened to Thea? And why us? I didn't know what to feel, or how to cope with this news. Luckily someone told us about the Down's Syndrome Association and we got in touch and received a lot of support.

More Real Life stories

Back home, I scoured the internet for inspirational stories about people who had Down's syndrome. At hospital appointments I started meeting other parents who had babies with the same condition - all of whom had gone through the same emotions as I had.

Just like me, they'd panicked and not known what to do. They, too, had worried about what the future held. But when we all spoke, we became stronger and the fear fell away. These women became good friends and we decided we'd help each other. 

A supportive circle

We set up a charity called psds providing support for children with Down's syndrome and their families. We invited other families and soon word of mouth spread. Meeting other mums really helped.

Sometimes there would be a few tears, other times we'd laugh together. But mostly, through meeting others in the same situation as us, I began to understand one thing again and again. Down's syndrome didn't define any of these lovely babies.

Each child had their own unique personality. Having an extra chromosome didn't make our babies all the same. Thea was more like Andrew and I genetically than she was different. And I began to feel stronger - almost defiant.

"We're not going to let the condition define her," I said to Andrew. And he hugged me and replied, "Absolutely. No way." And we were right. As Thea grew, her little personality really shone through. She loved music, singing and playing with her Barbie or outside on her trampoline.

She grew close to Rowan and the two had a favourite pastime - dressing up. They'd run off together then rummage through the dressing-up box. Then they'd come back and do fashion shows for us. Some days it was princesses, other days it was Disney characters. At Halloween they'd dress up as witches or cats.

Thea loved it. In fact, whenever we got the camera out, I noticed how Thea loved to pose and have her picture taken. She'd smile and stick a hand on her hip. The camera loved her.

Every Christmas I'd made a card of the girls to send to family using a picture I'd taken of them in their fancy dress. One day I dressed the girls in some Mini Boden T-shirts I'd ordered for them and took another snap. Later as I showed Andrew, pride surged through me.

"Don't they look beautiful?" I said. He nodded, as proud as me. "Like models," he replied.

Throughout that day Andrew's words kept popping up in my mind.

"Like models..."

Rowan and Thea did look like little models. It made no difference that Thea had Down's syndrome - she was every bit as confident and lovely as her sister.

An idea formed in my head and I grabbed our Boden catalogue. I found an email address and typed out a message: "I wondered if you'd ever considered a child with Down's syndrome modelling for you?" I sent the email before I could change my mind. Why couldn't my daughter be a model?

The surprise invitation

A few days later a reply arrived. The fashion company thanked me for the photo and then they said something else. They would consider Thea for a photo shoot. Excited, I kept the secret. I didn't want to tell Thea unless it was definite. I couldn't risk getting her hopes up just to have them dashed. So I waited.

A few weeks after that, another email arrived. "We'd like to invite both girls to London for a casting," it said. I clapped a hand over my mouth.

When Thea was born I'd wondered if she would ever have the same opportunities that other children would have. Now she was five and was about to be considered for a modelling shoot just like her sister for a major clothing firm. "Really Mummy?" Thea said when I told her, then she danced around the room with Rowan, who was just as excited.

A few weeks later I took my girls for a casting call. They took photos of both girls and had a chat to them. Rowan and Thea loved every minute and I noticed Rowan keep a protective arm around her little sister.

"I wonder if they'll get picked," I said to Andrew later that evening. Then fear gripped me. "Or what if one gets picked and the other doesn't?" He gave me a hug. "We can only wait and see," Andrew said.

I forced myself not to dwell on the shoot. I realised that neither of them might get picked. There was no doubt lots of other children were being considered. Instead I focused on the girls. Thea had started school and was a bright little girl who loved to learn and make new friends.

Then three months later, the email I'd been hoping for arrived. I read it over and over because at first I didn't believe it.

"Andrew!" I cried. "Boden wants to use both Rowan and Thea in a photo shoot for the catalogue!" Excitement bubbled up inside. Any mother whose child was chosen would be thrilled, but this was more than motherly pride. I was proud of both my girls, but this was a special victory. I was never ashamed of Thea's condition, and this proved how clever, pretty and normal she was. Down's didn't define her.

A few weeks later, Rowan, Thea and I caught the train from our home in Dorking, Surrey, to London Waterloo station. We travelled to a big house hired for the shoot. As we stepped inside, it was like a kid's dream come true. Music played, a trampoline was waiting in the sunny garden and there were goodies to eat.

Rowan could barely contain herself. "Come on, Thea," she cried. And they kicked off their shoes and ran outside across the grass to bounce on the trampoline.

The shoot was for a winter catalogue, so both girls were dressed in cord pinafores, tights and woollens. As the photographer took shots, Thea kept asking, "Can I have lipstick, please?" I giggled, so proud of her. Then, at the end of a long day of modelling, we went home.

A few moments of fame

A few months later, something dropped on our doormat with a thud. Rowan and Thea had been waiting for weeks, watching the letter box like a pair of cats ready to pounce. Now Thea ran to the doormat, picked whatever had dropped there up and brought it to me.

"Mummy," Rowan said. "It's the catalogue!"

My phone beeped as I turned the pages. It was my sister-in-law. "They're on page 25!" she wrote. Hands shaking, I sat both girls on my knee and turned to page 25. As I gazed at the page both girls' lovely faces looked back at me.

"Look!" I said.

"That's us!" Rowan squealed.

"Wow, wow!" Thea cried.

Later that night Andrew was met at the front door by two squealing little girls. Thea jumped up at her dad. "Daddy, daddy, look! It's us - Thea and me!" Rowan cried with delight.

Andrew couldn't have looked more proud. "My beautiful girls," he said, kissing them.

I took in the scene and blinked back tears. This was huge for us not just because our two girls were models but because Boden had given a child with Down's syndrome a chance to be represented.

Thea had felt just the same as her big sister; the same as any other little girl. And in that photo it wasn't the fact that Thea had Down's syndrome that you noticed - it was the fact she was a cute little girl. Just like Rowan.

I couldn't thank Boden enough.

Thea's now six, turning seven in July, and in the same school as her big sister. Rowan is nine. As a result of the Boden catalogue, Andrew, the girls and I recently appeared on TV during Down's syndrome Awareness Week. Thea told everyone how she wanted to be the country's next top model. I like to think that the photo is a testament to what kids like Thea can achieve and shows that no one should ever use a diagnosis like Down's syndrome as a label.

We are all different from each other. We all have different aspirations and we all have the ability to achieve a great deal.

Thea is no different to any of us in that respect.

Helen Shiers, of Dorking, Surrey, UK

What is Down's syndrome?

Down's syndrome, also known as Trisomy 21, is a genetic condition named after the doctor John Langdon Down who first regognised it in 1866.

Normal children receive 46 chromosomes (23 from the father and 23 from the mother), an error in cell division results in a child born with Down's receiving an extra chromosome-21, i.e. a 47th chromosome. Down Syndrome can be diagnosed during pregnancy where an abnormal ultrasound can detect the condition. After birth a blood test is usually the best method of diagnosis. Unfortunately, there is no way to prevent Down's. Maternal age is the main risk relating to the conception of a child with the condition. The chances of giving birth to a child with Down's after the age of 45 increases to (approximately) 1 in 19 as compared with 1 in 1500 for women in their twenties.

It results in children born with distinct facial features as well as a reduction in physical abilities and varying cognitive development. Children with Down's can have particularly noticeable facial features like a flat profile, small ears and a protruding tongue due their small mouth. According to the severity of Down's in a particular person, learning abilities are hindered and most adults with Down's are commonly found to have an IQ of about 50 compared to that of a normal child which is about 100. While life expectancy can range between 45 to 60 years old, progression with age is combined with afflictions of an Alzheimer's-like dementia.

Although Down's cannot be cured, speech and physical therapy are helpful in the person's quality of life. Living in an enriching and stimulating environment also helps a Down's syndrome patient develop skills and increases their capacity to learn new concepts.

Inside Info

To learn more about Downs syndrome and the charity Helen helped set up, visit www.psds.info

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