It isn’t uncommon for couples to struggle when trying to have a baby. So, when a struggling couple finds out they’re pregnant, they are filled with joy. They are finally getting what they’ve always wanted! What happens when they receive some shocking news that would change their lives forever from the doctor though?
Jodi and Matt Parry needed some help growing their family. They already had one child, but wanted to give Finlay, their son, a sibling to grow up with. After a miscarriage, the couple sought help. Soon after, Jodi discovered she was pregnant.
The couple was nervous during their first ultrasound. They wanted nothing more than to have a healthy child. The expression the sonographer wore when discovering the heartbeat made the parents worry.
The sonographer announced that Jodi and Matt were expecting twins! What a beautiful surprise. It isn’t unusual for twins to arrive early, but Jodi was shocked when she went into labor six weeks before her due date.
The twin girls were born on June 29, 2011. Their names were Isobel and Abigail Parry. Since they were born premature, they were rushed to the neonatal ward to receive the care and attention they needed. Jodi struggled with the immediate separation from her newborn babies.
As their daughters grew stronger, the Parry couple were excited to bring them home. However, doctors were concerned and kept running tests on the twins. It was two weeks after the twins were born that the doctor had to sit down and give the couple some difficult news.
Jodi knew that something wasn’t right. Tears started to fall from her eyes when the doctors took them into a private room to share the difficult news about the twins.
“I’m sorry,” were the first words that came out of the doctor’s mouth. “At that point, my world fell apart… I felt like someone had ripped my heart out,” Jodi said. After trying so hard to get pregnant, she couldn’t believe what was happening.
A mother’s love is something that cannot be broken. No matter what was wrong with the twins, she would love them unconditionally. With a long road ahead of them filled with hours of research and dedication, Jodi was ready to take on the challenge.
As Jodi did her research, she became confused with the medical jargon that was used and contradicting stories over the Internet. She wanted a clear understanding of how to care for her twins and give them the best life possible.
Not As They Pictured
“It was as if the whole world had ended. Life was not how I wanted it. I just shut down completely,” Matt told Barcroft TV. The days after talking with the doctor were filled with uncertainty and sadness.
As if having twins wasn’t going to be hard enough, the Parry couple now had a new obstacle to overcome. They were scared, of course, but prepared themselves for the challenges that lie ahead.
So Many Questions
Jodi has written about her experience on blogs and for charities. She felt very uninformed the first few days, which was very scary. She left the hospital without any answers to her questions. How was she going to take care of her twins without any information?
The twins had been diagnosed with Down syndrome. An extra chromosome causes this. What are the odds of having twins with Down syndrome? One in a million.
There are many health risks and issues that come along with Down syndrome, such as hearing and visual issues, Autism, blood disorders, heart abnormalities, and problems with hormones and glands. Jodi and Matt had no idea where to start their research or caring.
The twins went through several tests before the Parry couple were finally well-informed enough to make decisions regarding their children’s future and health. They discovered that Abigail was deaf and Isobel’s heart had a small hole in it. They both had under-active thyroid too.
Living a Happy Life
It’s seems that the twins are living happy lives from the photos their parents share. Jodi doesn’t believe that the Down syndrome has caused much more trouble for her. She simply says that it’s harder than when she had Finlay because there are two of them! Jodi can’t imagine why the doctor would say, “I’m sorry” about her girls. She sees them as perfect!
“I wouldn’t say that I have made any sacrifices because of the girls being born. It sounds sort of sugar-coated but the only things that they have brought into our life are positive. There’s nothing negative. There’s nothing in the world that could convince me to change them,” Jodi said in an interview.
The Twincess Trust
Inspired by their twins, Jodi and Matt started a charitable trust, which they call the Twincess Trust. They encourage people to share their stories and connect with one another. “It is about providing frank and honest advice based on real, personal experience. There’s a lot of negativity around the condition with the focus often being around what children with Down syndrome can’t do. Twincess is about highlighting what they can do.”
Raising Awareness and Providing Support
The charity has received an overwhelmingly positive response from family and the community. Jodi and Matt worked hard to create something great for the Down syndrome community to connect and support each other.
Getting Rid of the Stigma
“Downs syndrome is not an illness. It is nothing to be ashamed of, pitied or looked down upon – despite an extra chromosome, people with Downs syndrome are no different to anyone else. People with DS, and those around them, are very proud of who they are,” the charity’s mission statement reads.
See the Ups
“See the ups and not the downs” is the incredibly inspiring tagline the charity coined. They want people to focus on the positives of Down syndrome such as personality and accomplishments. This is a way to fight the stigma against Down syndrome. They were even endorsed by Andy Harry!
Going to School
Isobel and Abigail live pretty normal lives. They go to school and play with their brother as well as each other. They communicate through sign language and attend mainstream school, just like their brother.
Responding to Critics
Some people question the family’s choice to send the girls to a mainstream school. “In sending Abigail and Isobel to a mainstream school we have chosen to push them to succeed as much as we can, but we are not blind to the fact there are alternatives should they struggle,” Jodi responded to these critics.
Activities for All
The Twincess charity shares many events that children with Down syndrome can partake in such as football, swimming, horseback riding, and much more. “In the past it was believed there were many things that children with Down syndrome could not do when in fact they had never been given the opportunity to try,” CEO of the Down’s syndrome Association, Carol Boys, said.
Jodi and Matt showed just how strong they were by creating such an important charity and foundation while raising their children.
The Twincess Ball
While the Twincess charity has many events, their gala, the Twincess Ball, is one of their most successful. The black-tie affair raised £3,000!
Raising Awareness with Socks
To raise awareness of Down syndrome on World Downs Syndrome Day, the Twincess charity encouraged people to wear colorful, mismatched socks to start the conversation.
Jodi will always remember the feeling of being so ill informed after leaving the hospital with her twins. So, on their website they added a section with questions about Down syndrome for other parents.
Twincess is considered a safe space for families and children. There is no such thing as a stupid question and there is no judgment of others. It’s a supportive group who takes anyone affected by the syndrome.
The website contains information about the Parry family as well and their experience with Down syndrome and how it affected their lives as well as their son, Finlay.
The twins, now 6 years old, are incredibly close. They also have a close relationship with Finlay.
The Sun have called the girls The Twincredibles because of their amazing story.
Sorry For What?
To this day, I would love to ask that doctor, ‘what are you sorry for?’ There’s nothing to be sorry about, it’s just a different journey. Our girls bring us so much joy,” Jodi said in a blog post.
“If there had been a bit more understanding and listening to us as parents, then perhaps our distress ould have been heard and someone could have directed us to information that told us what to expect for our daughters’ futures, not just scientific jargon about extra chromosomes!” Jodi said. Twincess aims to educate parents in a way that they can understand.
No More Fear
Due to change of the way Down syndrome is seen, therapies, and medical procedures, there is nothing to fear about having a child with Down syndrome. There are plenty of support groups that make it possible to give the child a “normal” life.
Living a Long Life
Research and medical help has come so far along that people with Down syndrome are now able to live well into their 50s and 60s. In 1929, the life expectancy for children diagnosed with Down syndrome was only 9 years old.
Doing Their Best
Jodi and Matt did everything they could to research Down syndrome and provide necessary medical treatments to their daughters so they could live a long life.
The twins, now six years old, are having wonderful fun being kids. Their family supports them in whatever they want to do and encourage them to push themselves. Twincess has changed the family’s lives forever and they hope to do the same for others.