Every couple is extremely excited when they first find out they are expecting a child. The 9 months leading up to the birth are often filled with fun milestones such as decorating a nursery room, baby showers, and gifts and warm wishes from family and friends. Every parent dreams of what their child will be like and what they will accomplish throughout their life. Expected parents often put in a lot of time and effort into planning before their bundles of joy even arrive. They read parenting books, go to birthing classes, and sometimes even put their unborn children on the waiting list for the best private school. However, nothing can prepare a parent for hearing devastating news about their child after their born. After waiting so long for their birth and hoping for a healthy child, it is an awful experience to know your child might have to struggle throughout their life.
Matt and Jodi were very excited to welcome their twins into the world and raise them along their son Finlay. After suffering a tragedy before Jodi finally became pregnant with their twins, the pair felt extremely blessed to have received the exciting news. But nothing could prepare the couple for the shocking diagnosis doctors gave to not one, but both of their newborn twins. The couple, however was able to turn this shocking news into a positive, and in the process, help other people too.
From heartbreak to hope
Matt and Jodi Perry were already parents to a beautiful son when they decided to try for another. The parents were excited when Jodi found out she was pregnant again. Unfortunately, they suffered every potential parent’s worse nightmare when Jodi had a miscarriage. Heartbroken, the couple resolved to try one more time and Jodi became pregnant again. After just suffering a miscarriage, Jodi was very cautious with her excitement and naturally more anxious than the average new mom would be.
Something’s not right
The couple were very nervous as they attended their first ultrasound appointment for the baby. The pair deeply wanted to expand their family and were just hoping for a healthy child. After going through such a traumatic experience, there must have been a lot of tension and nerves in the ultrasound room. After searching, the sonographer was able to locate the heartbeat, causing relief between the couple. But they soon realized that something was out of the ordinary.
Matt and Jodi could not believe their fortune when they were told that Jodi was pregnant with twins. The couple, who were hoping to expand their family by one more received the blessing of another child, which was beyond their expectations. Matt and Jodi were extremely excited by the news and began buying things and organizing a new nursery for their expected arrivals. 6 weeks before their due date, Jodi was in labor early as is often common with pregnancies of multiple babies.
The twins are born
The day they had been looking forward to finally arrived when Jodi gave birth to twin daughters, Abigail and Isobel Parry in 2011 on June 29th. Alas, Jodi’s moment with her new babies was short as they were quickly sent to the neonatal unit soon after their birth. Due to their small birth weight, the twins needed special care to ensure their survival. Jodi and Matt were hopeful but were saddened that their daughters were separated from them so soon.
Doctors show concern
After being in the hospital for quite a while, the girls seemed to be doing better and getting stronger day by day. Matt and Jodi were excited to start their new life in their home with their children and get out of the hospital. While the twins were in the hospital, nurses and doctors began running tests on the girls after some concerns arose. A couple weeks after their birth, the doctor told Matt and Jodi that she had some news about their daughters.
Anticipating the worst
When the doctor approached Jodi and told her she had news about her twins, Jodi immediately knew something was not right. The doctor had a serious look on her face which prompted anxiety between the couple. They were taken into a separate room where Jodi started to cry, expecting the worst. Horrible thoughts were in her head about what could be wrong with her precious newborns. What could possibly be the matter with the twins?
It was obvious that something was very wrong when the first words out of the doctor’s mouth were, “I’m sorry.” She revealed to the parents that both newborn daughters had Down Syndrome. Jodi said of that moment, “At that point, my world fell apart… I felt like someone had ripped my heart out.” After suffering so much, waiting so long, and going through a devastating miscarriage, the Parry’s once again had to face more heartbreaking news.
1 in a million
The chances of Down Syndrome occurring in an average pregnancy are 1 in approximately 1000. The chances of this happening, however, with twins are literally one in a million. Down Syndrome occurs with the presence of a third copy of the chromosome 21 in a person. The condition typically causes growth delays, distinct physical attributes, and mental delays. Although the diagnosis was not what the Parrys expected, Jodi was committed to supporting and loving them no matter what.
An overwhelming amount of information
After they received the diagnosis, Matt and Jodi began researching about Down Syndrome on the Internet. The couple found a sea of confusing and contradicting information. Much of it was littered with medical lingo that was difficult to understand. They were unable to find the information they wanted in order to help their daughters. Due to the vast amount of medical information on the Internet, the couple could not weed out what was true and what was false
A big adjustment
Having this diagnosis come out of the blue came as a huge shock to the Parrys. Matt and Jodi had to adjust to their new life while knowing that their daughter’s futures were uncertain. Matt said, “It was as if the whole world had ended. Life was not how I wanted it. I just shut down completely.” The couple were grief stricken when they first brought their daughter’s home from the hospital. However, their situation was about to take a turn for the better.
Asking difficult questions
Looking back, Jodi remembers how scared she was when she first received her daughters’ diagnoses. She recalls that after going home from the hospital, she had more questions than answers in regards to her newborns. She did not even know if her daughters would ever be able to walk, talk, or go to school. The future of her newborns seemed so uncertain but she wanted to help them and do whatever she could to ensure a normal life for her daughters.
Along with a diagnosis of Down Syndrome comes a potential plethora of other serious health concerns. People with Down Syndrome are at higher risk for health issues than the general population. Some examples are heart problems, Leukemia, thyroid problems, vision problems, blood disorders, spine conditions, and hearing loss. The Parrys did not know which, if any, health issues their daughters suffered from which only added to their valid concern. A diagnosis of Down Syndrome is difficult enough to swallow, but adding onto it with other medical concerns only makes it harder.
Finding answers to their questions
After waiting so long to receive some answers about their daughter’s conditions, the Parrys finally got some. The girls went through multiple tests to find out what other conditions they suffered from. Doctors discovered that Abigail was deaf and Isobel suffered from a hole inside her heart. In addition, both girls had a thyroid that was under active. This can cause issues with sleeping, weight, and can even cause depression. Although these are things a parent would not want for their children, the Parrys finally had answers and they could now focus on helping their daughters.
The best parents
Isobel and Abigail have had an amazing childhood due to the amazing attention and care of their loving parents. Even though she was initially saddened by the Down Syndrome diagnosis, Jodi has not never felt burdened because of her daughters. She said the only thing that has been harder about raising the twins than their older brother Finlay is the fact that they are twins. The twins are living happy and fulfilling lives despite their diagnosis.
“There’s nothing negative”
In an interview with Barcroft TV, Jodi said, “I wouldn’t say I have made any sacrifices because of the girls begin 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.” Matt and Jodi’s positive outlook on their situation led to them doing something incredible, not just for their girls but other children too.
The Parrys wanted to help other families in similar situations. They decided to start a charity that they named Twincess. The goal of the charity is to foster communication between families facing the same issues. According to the Parrys, “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 that have Down Syndrome can’t do. Twincess is about highlighting what they can do.”
Taking care of three children is a difficult enough task on its own. Many would think that if two of your children have Down Syndrome you would, understandably, not have time to start an organization. However, Jodi and Matt have decided to give back to the Down Syndrome population and share their knowledge with other parents who have children with the condition. This shows how selfless and giving the Parrys are. While most people in their situation would chose to concentrate on their own family, the Parrys decided to help other families, too.
Not an illness
Many people view Down Syndrome as a disease that people suffer from. One of the goals of the Parrys’ charity is to break this stigma. The Parrys want people to know Down Syndrome is not a condition to be embarrassed by. Twincess has a mission statement which reflects that idea. It reads, “Down Syndrome is not an illness. It is nothing to be ashamed of, pitied or looked down on – despite an extra chromosome, people with Down Syndrome are no different to anyone else. People with DS, and those around them, are very proud of who they are.”
Matt and Jodi continue to have a positive attitude. Their charity advocates ‘seeing the ups and not the downs’. They want parents of children with Down Syndrome to see all of the positives and blessings it can bring into their lives and the lives of their children. They hope that by using this slogan, they can combat the stigma associated with DS. They believe that there are so many positive parts of DS, such as who their children are, and the joy they bring to their parents’ lives.
Off to school
Although Jodie was initially concerned that her daughters would never have the chance to attend school, walk, or speak, her dream has come true and both girls attend the same school as their brother. Both girls can walk and even though they mostly talk through sign language, their speech is improving. Matt and Jodie have garnered some criticism for choosing to send their twins to a conventional school, however, they are very confident with their decision.
Pushing them to succeed
While most parents might decide to put their children with DS in a special school, the Parrys chose a different route for their daughters. Jodi said in an interview to the Mirror Online, “in sending Abigail and Isobel to a mainstream school, we have chosen to push them to succeed as much as they can, but we are not blind to the fact there are alternatives should they struggle.” The Parrys do not want their daughters to feel different from other children and are confident in their capability of achieving great things.
Nothing stands in their way
In the past, many believed that people with DS could not do the same things as the average person. The Parrys are working to break that myth. On their website, there is a list of the many hobbies and activities that people with DS can participate in. Carol Boys, who is the head of the DSA (‘Down Syndrome Association’), said of this topic, “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.”
Creating a community
Through their charity, Twincess, Matt and Jodi have created a strong community of parents who share their stories and knowledge with each other. They have even organized and hosted events in order to bring people together, and also to raise money for their charity and DS awareness. This benefits both people with Down Syndrome and their families. Parents on similar journeys now know that they are not alone and other people can relate to their situation.
The Parrys even organized a gala dinner to support Twincess. As a result of the black tie event, they were able to raise 3000 pounds. They have also organized other events such as football tournaments, skydiving events, bike rides, and runs, all in order to raise money. With all of their hard work and dedication, the Parrys have contributed an incredible amount to the awareness of DS and educated so many people about the condition.
Wearing socks to make people talk
Another cause that Twincess participated in was World Down Syndrome Day, which is noted every March 21st. WDSD is an international day of awareness for Down Syndrome that encourages people to create their own activities in order to raise awareness for DS. Twincess decided to encourage people to wear silly socks with the intention of starting a conversation about Down Syndrome. They saw it as an easy way that would get people involved in the conversation.
The hardest time of Matt and Jodi’s journey was right after they left the hospital having a shocking diagnosis and so many questions. The biggest parts of the Twincess online page is the ‘FAQ’ section. The Parrys did not want any other parents to go through the feeling that they went through. Examples of the questions answered on their FAQ page include, ‘do people with DS die at a young age? and ‘can people with DS move away from home?’
A supportive community
Jodi motivates women who find out they are pregnant with a child with Down Syndrome to read her website, and wants it to be a supportive place for anyone affected by the condition. Some questions that are on the Twincess website are also personal questions about Matt and Jodi and even about how having twins affected their attention for their other child, Finlay. The two do not shy away from answering even difficult questions and make an effort to be honest and forthright.
Sisters by blood, friends by choice
As you can see from all of these pictures, Abigail and Isobel have a very close relationship. The girls are now six years old and have a bond just the same as any other set of twins. They are also very close with their older brother Finlay. The girls are usually laughing, playing together, and enjoying their childhood. Their mother knows that they are perfect and does not think the doctor at the hospital needed to say, “I’m sorry.”
What are you sorry for?
On an online blog, Jodi discussed that fateful moment in her life. Had Jodi known then what she knows now about her daughters, she says, “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.” It raises the question whether, had the doctor presented the news in a different way to Jodi and Matt, they might not have had so much worry about their daughters.
The parents agree that this is exactly the situation that Twincess is trying to prevent. Jodi says of that situation, “if there had been a bit more understanding and listening to us as parents, then perhaps our distress would 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!” With the success of Twincess, hopefully the Parrys will ensure that other parents don’t have to experience what they did.
A changing view of DS
In the past, a diagnosis of Down Syndrome basically ensured that the child would not be able to have a normal life. Nowadays, the way society views people with DS has changed dramatically. With so much assistance for families and parents, in addition to new innovations and treatments, people with Down Syndrome are able to live happy and meaningful lives. A Down Syndrome diagnosis does not have to be the disturbing news it used to be.
In addition to living meaningful lives, people with Down Syndrome now also live longer lives. In 1929, most children with Down Syndrome did not live past nine years-old. Now, the life expectancy of people with Down Syndrome has increased to 60 years-old and sometimes even older. This is obviously dependent on which medical condition each person with DS has, but overall this is a positive and dramatic shift in bettering the lives of people with Down Syndrome.
Now Abigail and Isobel are six years old and are just as happy and outgoing as other kids their age. Matt and Jodi have ensured that the twins have everything they need at their disposal from the appropriate medical treatments to a great education. The two girls are energetic, fun-loving, and are always excited to learn. We think these girls are absolutely adorable and we cannot wait to see what they accomplish in the future!