Mums of children with Down syndrome share their stories

Their children all share one thing in common – an extra chromosome – but their stories couldn’t be more different. 

Some mums watched as their children battled open heart surgeries and cancer, others were told their babies wouldn’t survive at all.

And many have dealt with the stares or pitying glances, the apologies or the rude remarks. ‘I’m sorry’, some say. ‘You didn’t take the test?’, others ask.

But there’s one more thing these seven mums have in common. They have learned that their children, who all have Down syndrome, only brightened their life more.

They are all part of the T21 Photo Project, which Lori Punzell created to show people that children with Down syndrome are nothing to be afraid of or sorry for.

‘When I started this project, my main aim was to show people that children with Down syndrome still have a wonderful life,’ Lori told Daily Mail Australia.

‘Too often people think our kids and families are suffering. I wanted people to see the love that families have for their children, and the love they get in return.’ 

Lori Punzell, mum of 13-month-old Lexi, created the T21 Photo Project to show people that children with Down syndrome ‘still have a wonderful life’

Lori was shocked when she first heard the words Down syndrome. But her mum, a nurse, assured her that Lexi would still have a wonderful life

If my baby can understand and experience the most valued experiences in our world, then the rest is just frosting,' Lori said

Lori was shocked when she first heard the words Down syndrome. But her mum, a nurse, assured her that Lexi would still have a wonderful life

After a blissful happy pregnancy and a smooth delivery, Lori Punzell and her husband were shocked when they heard the words ‘Down syndrome’. 

The first 48 hours were terrifying for the Mackay, Queensland family, who had little knowledge of the condition. 

‘I was truly scared,’ Lori, 41, recalled. ‘I didn’t know if that meant our child would talk, walk, or have a quality of life.’ 

The day before they found out little Lexi had T21, Lori and her mum went to the special care nursery for a heel prick test.

Lori turned to her mum, a nurse, and asked the big question: ‘Do you think she has it mum?’. 

‘Yes darling, I think she does,’ her mum replied.

So Lori, whose daughter is now 13 months old, decided to ask her some very important questions.

Will she walk? Yes, her mother reassured her. Will she talk? Will she see beauty in a sunset? Still, yes. Will she know love? Yes, yes, yes.

‘And with that, I was healed,’ Lori recalled. ‘If my baby can understand and experience the most valued experiences in our world, then the rest is just frosting.’ 

‘I walked out of the hospital, ready to lace my boots up and deal with this the best we can.’   

It had only been a year since Laurita Upson Jones lost a little boy to pregnancy complications that her daughter Sophia (pictured) was prenatally diagnosed with Down syndrome

It had only been a year since Laurita Upson Jones lost a little boy to pregnancy complications that her daughter Sophia (pictured) was prenatally diagnosed with Down syndrome

Fast-forward four years and Sophia has proven to be as resilient as ever, and provided an unconditional love that awes her mother

'The hugs are more - maybe it's because of the low muscle tone - but they're more intense. You feel like they're actually wrapped around you,' Laurita said

Fast-forward four years and Sophia has proven to be as resilient as ever, and provided an unconditional love that awes her mother

It had only been a year since Laurita Upson Jones lost a little boy to pregnancy complications that her daughter was prenatally diagnosed with Down syndrome. 

Her son, who died when she was six months pregnant, had likewise been diagnosed with the genetic disorder. 

‘I was still pretty numb with what happened to our son, so it was kind of a blur,’ Laurita, 46, told Daily Mail Australia. 

‘All I knew was that if she was healthy enough, then to me that’s worth going on with.’  

Fast-forward four years and Sophia has proven to be as resilient as ever, and provided an unconditional love that awes her mother. 

‘The hugs are more – maybe it’s because of the low muscle tone – but they’re more intense. You feel like they’re actually wrapped around you,’ Laurita said.

It’s a love and understanding that she sometimes wished other strangers in their Southern Highlands community could give Sophia as well. 

‘We’ve had children stand and point and laugh at her but most people don’t speak it – the look on their faces, the stares you get in the supermarket, says it all,’ she said.  

But the mum-of-two had discovered that Sophia can do everything other children can, it may just take her a little longer to learn.

‘It doesn’t matter what disability they have – they still have abilities,’ she said. ‘No matter how big or small. And their lives are worth it.’ 

While some mums didn't find out their newborn had T21 until after the birth, Tanya Gaydon was told at the 20-week scan that one of her twin boys, Ethan (pictured), wouldn't survive

While some mums didn’t find out their newborn had T21 until after the birth, Tanya Gaydon was told at the 20-week scan that one of her twin boys, Ethan (pictured), wouldn’t survive

And then the delivery came, and Ethan (pictured with brother Max) was absolutely fine

And now the two-year-old is continuing to light up his family's life

And then the delivery came, and Ethan was absolutely fine. And now the two-year-old is continuing to light up his family’s life (pictured right with brother Max)

'My daughter sees that we are all special, and she wants to teach people about how special it is to have a brother with Down syndrome,' Tanya said (pictured is Ethan with his sister) 

‘My daughter sees that we are all special, and she wants to teach people about how special it is to have a brother with Down syndrome,’ Tanya said (pictured is Ethan with his sister) 

While some mums didn’t find out their newborn had T21 until after the birth, Tanya Gaydon was told at the 20-week scan that one of her twin boys wouldn’t survive. 

Ethan also had a hole in his heart and fluid in the brain and stomach. The Brisbane family was absolutely crushed. 

‘We had to go home to my little girl, who was so excited to find out if she was going to have sisters, brothers, or both,’ Tanya, 40, said. 

‘I remember sitting on the floor trying not to cry, showing her ultrasound pictures. I broke down, I sobbed. The whole pregnancy was then tainted.’ 

Over and over the doctors told Tanya and her partner that Ethan wouldn’t survive, that they should consider selective termination. 

And then the delivery came, and Ethan was absolutely fine. And now the two-year-old is continuing to light up his family’s life.

‘He has changed us for the better. He has made us better people, better parents, and taught our family that being different is a blessing – not a curse,’ Tanya said. 

‘My daughter sees that we are all special, and she wants to teach people about how special it is to have a brother with Down syndrome. She tells me she wants people to see how amazing it is.’  

‘Ethan has opened our eyes to see that we don’t need to be perfect. Life is better when we’re all different.’  

Kathryn, now 49, and her partner had been parenting for 23 years, including fostering two babies with T21 before they adopted Abbie, now five years old 

Kathryn, now 49, and her partner had been parenting for 23 years, including fostering two babies with T21 before they adopted Abbie, now five years old 

Abbie joined the northern New South Wales family in 2013, and at the time was a tiny malnourished baby who took an hour to drink a bottle

But now she is thriving, with a knack for knowing exactly when someone needs a big hug, a shoulder to cry on, or a huge laugh

Abbie joined the northern New South Wales family in 2013, and at the time was a tiny malnourished baby who took an hour to drink a bottle

'Abbie belongs on the stage, I'm sure of it,' Kathryn said. 'She is an all-dancing, all-singing, performing one-man-show. Wherever we go she makes people smile'

‘Abbie belongs on the stage, I’m sure of it,’ Kathryn said. ‘She is an all-dancing, all-singing, performing one-man-show. Wherever we go she makes people smile’

Even as a young girl, Kathryn knew she wanted to adopt one day.

And growing up with a mum who was a principal at a special needs school, she always felt a connection to children with disabilities. 

Kathryn, now 49, and her partner had three biological children, an adopted daughter, and fostered two babies with T21 that they still keep in touch with.

So after 23 years of parenting, the couple felt ready to bring home another child – and they knew it was going to be one with Down syndrome.

Abbie joined the northern New South Wales family in 2013, and at the time was a tiny malnourished baby who took an hour to drink a bottle.

But now the five-year-old is thriving, with a knack for knowing exactly when someone needs a big hug, a shoulder to cry on, or a huge laugh. 

‘Abbie belongs on the stage, I’m sure of it,’ Kathryn said. ‘She is an all-dancing, all-singing, performing one-man-show. Wherever we go she makes people smile.’ 

But Kathryn still worries about how others view her little girl, that they’ll only see her through the lens of ‘out of date stereotypes’. 

‘The hardest part is knowing that we’re raising Abbie in a world where many people believe that she shouldn’t exist. That people with Down syndrome shouldn’t be born and will have no quality of life,’ she said. 

‘I wish more people knew just how much richness and diversity children with DS bring into the world. People with DS are just as diverse as everyone else.’ 

Jayne Brumby is continuously surprised by her little boy Eli's emotional intelligence. He was just 18 months old when he signed 'sorry' to his big sister 

Jayne Brumby is continuously surprised by her little boy Eli’s emotional intelligence. He was just 18 months old when he signed ‘sorry’ to his big sister 

'Eli brings joy to the people who look lost, alone, or less fortunate. Of all the strangers on the beach, Eli picked the one who needed a hug,' Jayne said 

‘Eli brings joy to the people who look lost, alone, or less fortunate. Of all the strangers on the beach, Eli picked the one who needed a hug,’ Jayne said 

Jayne Brumby is continuously surprised by her little boy Eli’s emotional intelligence. 

Once told by doctors that Eli likely wouldn’t survive, the southwest Victoria mum has watched her two-year-old bring joy to his family and strangers alike.

When Eli was just 18 months old, he signed his very first word – “sorry” – to his big sister when she cried after he bit her on the arm. 

But an even more astonishing moment was one day on the beach, when Eli immediately ran up to greet a woman he had never met. 

Jayne’s friend, who was babysitting Eli that day, followed him and apologised. But the woman just smiled and picked up the boy, who snuggled into her shoulder.

Tears were in her eyes as she passed Eli back to Jayne’s friend. Then a man came up and thanked them.

The woman had been his wife, and they’d had a little boy with Down syndrome too. But he was too weak to live and didn’t survive the birth. 

‘Eli seems to have a magnet that attracts all sorts of people to us,’ Jayne, 39, said. ‘If we are catching public transport, I can guarantee the most interesting people will stop to converse with us.’ 

‘He brings joy to the people who look lost, alone, or less fortunate. Of all the strangers on the beach, Eli picked the one who needed a hug.’ 

‘And that is a gift I’m proud he has.’  

In her short four years, little Jacinta has not only overcome three open heart surgeries, but also battled leukemia

In her short four years, little Jacinta has not only overcome three open heart surgeries, but also battled leukemia

Jacinta was diagnosed with leukemia when she was just one years old, and had to have a third surgery after finishing chemotherapy

Now Jacinta is in kinder where she is making friends and learning the alphabet all on her own

Now Jacinta is in kinder where she is making friends and learning the alphabet all on her own

In her short four years, little Jacinta has not only overcome three open heart surgeries, but also battled leukemia. 

‘Every time we thought she was done with needles, surgeries and medications, it would all happen again,’ her mum Peggy Hooper, 41, said. 

The day Jacinta had her last chemotherapy session, Peggy found out she would need heart surgery once again.

It has been a roller coaster for the Melbourne family, but now Jacinta is thriving in kindergarten. 

Peggy revealed she is making friends, learning the alphabet without help, emptying the dishwasher, cheering on the Tigers, and even helping her mum cook. 

Jacinta, who Peggy calls the ‘toughest, bravest child I know’, has also taught her parents so much more than they ever imagined. 

‘What I never expected about having Jacinta was how very normal it would be,’ she said. 

‘She has the same younger sister issues as her next older sister did, and as I did when I was young.’  

‘This life has presented so many opportunities to learn and she has surprised us all, over and over again’  

The second Charmaine Alley laid eyes on her son Max, she thought he was perfect. She and her partner had adopted the 18-month-old when they found out they couldn't have children

The second Charmaine Alley laid eyes on her son Max, she thought he was perfect. She and her partner had adopted the 18-month-old when they found out they couldn’t have children

But when Charmaine, 38, took him out into the real world she realised that others saw him differently, and was shocked at the comments some strangers made 

But when Charmaine, 38, took him out into the real world she realised that others saw him differently, and was shocked at the comments some strangers made 

'Often people tell us how blessed Max is to have us, but we quickly correct them and let them know that we are the one blessed to be able to do life with this little legend,' she said 

‘Often people tell us how blessed Max is to have us, but we quickly correct them and let them know that we are the one blessed to be able to do life with this little legend,’ she said 

The second Charmaine Alley laid eyes on her son Max, she thought he was perfect. 

She and her partner had adopted the 18-month-old when they found out they couldn’t have children.  

For weeks the family relished alone time with their new bub. But when Charmaine, 38, took him out into the real world she realised that others saw him differently. 

‘For the first six to 12 months, strangers’ comments made me want to lock us in the house,’ she said. 

A mum at the park took one look at Max and told Charmaine, ‘Oh, you didn’t get testing done’. An old man came up to her on the street and said ‘I am sorry you got one of the special ones, life will never be as you dreamed’. 

And when Max, now four, opened a chocolate at a supermarket register and Charmaine took it away from him, the woman behind her remarked: ‘My dear you are going to have enough battles with him, just let him have the chocolate’. 

‘I wanted to scream at her, “He is not dying!'” Charmaine, of Tamworth, recalled.  

‘I was not sad because I thought there was truth in what any of these people had said, but because people had already made up their minds on who my son was due to his diagnosis.’ 

‘Often people tell us how blessed Max is to have us, but we quickly correct them and let them know that we are blessed to be able to do life with this little legend.’

Read more at DailyMail.co.uk