Showcasing individuals within the Down syndrome community.

21 Stories: Meet Kyle Whyte; the friendly movie enthusiast

The Whyte family gives us a glimpse into Kyle’s active life:

Meet KYLE – our 26-year old son who loves dancing, Disney movies, computers, eating out, hanging with his friends, music (Taylor Swift/One Direction), going to concerts/movies, riding his 3-wheeled bicycle, playing sports, and his family. He especially enjoys watching movies on Netflix on TV and you tube videos on the iPad at the same time!

We moved to Oakville in 1993 (from Montreal) and joined the Halton Down Syndrome Association (HDSA).  Through HDSA we participated in many family BBQ’s, fishing derbies, dances, farm outings, play groups, and parties. It was then that Kyle formed friendships with his peers with Down Syndrome and their siblings. He attended speech therapy (with Kim Pace) and music therapy (with Noreen Donnell) for many years.

As a teenager Kyle joined various sports offered through Oakville Special Olympics. Now he focuses on basketball and bowling and has attended many competitions and tournaments.

Since graduating high school, Kyle has been attending day programs with Community Living Oakville (CLO) (4 days/week). He is learning to play the bass guitar in a band music therapy program through CLO. This year he has performed 3 gigs at local pubs in Oakville.

Kyle has also been part of the HDSA Graduate Group (those over 21). They organize social events approx. every 2 months (go to movies, bowling, hiking, football games, hanging out, volunteering at the GO21 walks, etc.) He always looks forward to getting together with these friends for the music, dancing and of course the food!”

21 Stories: Meet the playful Elyse Purdham

Elyse’s mom shares a personal account about her little girl:

“When I was 28 years old, and half way through pregnancy with my second child, our baby was given a prenatal diagnoses of Down syndrome. At the time we found out, I experienced intense grief marked by sadness and worry. The following day, my husband and I flew on a scheduled trip to the island of Barbados for a friend’s wedding with red eyes and tear-stained cheeks. During that precious week away, with time alone and relaxation, we came to appreciate that we were grieving the life of the typical child we were expecting, but that we also looked forward to welcoming the child who was very much alive inside of me. At the end of the week, with the bright sun overhead, I stood along the beach as the water lapped the shore, caressing my toes, and let my grief sail away on the waves of the sea. I vowed to become an advocate for my daughter.  Nothing worth having comes easy. We soon found out that shortly after birth, our daughter, Elyse, would need surgery to repair a blockage in her duodenum. The scar across her abdomen will forever serve as a reminder of how lucky we are to have her in our lives (and how thankful we are to the doctors and nurses of McMaster Children’s Hospital).  But that was just the beginning. After Elyse was born, we connected with our local Down syndrome association in Hamilton, and our eyes were opened to a whole new community and a wealth of information. We then moved to the Halton region, and were warmly welcomed into the well-established Down syndrome community there, which has become an integral part of our family’s life, and provided us with immense and immeasurable support, as well as long-lasting friendships.

Elyse is a healthy three and a half year-old now, and will be attending a French first-language school come September. She loves to run, play with her peers, and sing along to her favourite songs on the radio. Her preschool teacher recently commented that it’s not what makes Elyse different that draws the other kids to her, but that the other children like to play with Elyse because she’s kind, and approachable.

Through my daughter’s diagnosis, I was given a second set of eyes through which to view the world. I have come back to writing and volunteering, which have always been important to me, but never a priority. I was given the courage and opportunity to travel the world, and flew to India for the World Down Syndrome Congress in August 2015.

What began as a seed of grief has grown and transformed, blossoming fully into the most beautiful experiences of my life. Thank you, Elyse. We love you.”

 

21 Stories: Meet Jacob; the boy who exceeds expectations and breaks limitations

I will always hear those words echoing in my ears “it’s not good news; your baby will have Down syndrome”.  Confused and scared I remember sitting and listening to doctors tell me all the things my child will never do and that he will never be like ‘normal’ kids. This information was determined months before he was even born.

This journey over the past 18 years has taught me many things; most importantly the concept of ’normal’ is overrated. Living life by a set of guidelines that stipulate when and how certain aspects of your existence should be accomplished, is a road I am proud to say we didn’t travel on. Instead we took the detoured route that showed us a road of determination, enthusiasm and perseverance. A road that showed us it doesn’t matter how and when you are to get somewhere, it’s the experience of the journey that you determine that matters most.

Jacob has always exceeded limitations that were ever put on him. When he looks at me and says “I got this”, I can be confident in knowing that he truly does. With a zest for life; he is a sports enthusiast who is always willing to try something new! He is witty, funny and has a charisma about him that attracts people to him. He is very social and enjoys being with his friends and family. He is looking forward to turning 19 so he can hang out at the pub with his buddies, graduate High School and attend college like his sister so he can one day work in the field his passions lie, the movies!

21 Stories: Meet the heart-melting Matthew sheppard

The Sheppard family shares the heart warming story of the joy their smiley little boy has brought their family in the short 4 years of his life:

“Our incredible 4-year-old, Matthew Caleb Sheppard, was born at home in the wee hours on May 16, 2012. With the help of two wonderful midwives, Matthew arrived without complication. He was rather blue, however, and this was our first sign of a heart issue. The midwife put Matthew on my chest and I knew right away that he had Down syndrome. What I didn’t know was how much joy – I mean pure joy – that this little being would bring me, my husband, the entire family, and so many others.

Admittedly, the days and perhaps months that followed were difficult. I knew very little about what it means to be born with Down syndrome. I wondered, would he be accepted by others? Is it possible for him to one day ride a bike? Fall in love and get married? Hold a meaningful job? I didn’t know what life would bring him or us as a family. But I do now… Joy! There are few people that make me smile as brightly, laugh as deeply, cheer as loudly, and love as wholeheartedly as Matthew. “

21 stories: Meet the loving Liam Reid

The Reid family shares the story of happiness that unfolded when Liam joined their family. Their experience demonstrates that a Down syndrome diagnosis does not take away from the wealth of joy that comes with parenting <3

“Liam was born on December 21 st , 2005, 2 days before Robert’s and my 1 st anniversary. From the moment he was born, our whole family was smitten with him.

Liam has always been a superstar in our eyes. He works hard to reach milestones and one way or another he always reaches his goal. He has a healing touch and to watch him with his grandparents is a beautiful sight. He loves with his whole heart and touches each and every person who meets him.

He is a great big brother to his sister Evalyn. He is always there to cheer her on at a dance competition or to give her a hug in the morning.

Liam continues to fill our lives with laughter, happiness and wonder. He loves to swim, play baseball, play basketball, dance, read and sing. Most of all, he loves hanging out with his friends.

We have been truly blessed to be Liam’s family.”

21 Stories: Meet Liam Kealy; the tiny dancer

After years of trying to conceive Tricia finally got her wish and became pregnant with her older son Seamus. A magical gift but tainted by genetics related concerns from doctors after the initial series of ultrasounds. They advised Tricia and her husband Kevin to consider terminating the pregnancy due to a genetic marker they found, but their gut and strength told them “NO”. Seamus was born healthy with a wealth of energy and zest for life. At the time Tricia was content and happy to have been blessed with one child, but considered adding a second addition to their family in the future. She could not have imagined it would happen as fast as it did and before they knew it they were pregnant with baby #2.

At the 12th week mark Tricia went about the standard set of pregnancy testing when a scan revealed the same genetic markers that appeared with their older son. They were sent back to the genetics department, anxious and concerned. On the 20th week Tricia had a scheduled ultrasound, which revealed their little boy had a high likelihood of having Down Syndrome due to the genetic markers associated. There was never a question in their minds that termination was not an option. With the movements of their son inside, Liam had become part of the family long before they ever saw his precious little face. Tricia and Kevin enjoyed the pregnancy despite the challenges ahead. They could not have imagined just how much impact one small child could make on so many people when he finally came to the world. At first Liam struggled to sit up, but after ceaseless efforts he sat up at 13 months and never looked back! He went swimming, did horseback riding therapy, and took up physiotherapy to learn to walk. He used a walker and got leg braces, but finally at 3.5 years he took his first steps and now it’s hard to keep up with him. He has everyone running after him at all times! His delay in walking never stopped his ability to talk and at times he would chat up a storm with anyone in sight. Even though the conversation is often cryptic, Liam never fails to say “Hello” and lights up the room wherever he goes.

Liam has a love for art, music, reading and loves to dance. His persistence, patience, love and determination taught his family to never give up! The Halton Down Syndrome Association (HDSA) and its many contributors have provided a tremendous blanket of support for the family, leaving Tricia and her husband Kevin happy and grateful. Most importantly they are thankful to the many friendships they never thought they would make.

The Have a Heart for Down Syndrome (HHDS) foundation will continue to support its sister associations to provide other families in similar circumstances with the financial, moral and human support they need to overcome the hardships and focus on the opportunities ahead!

21 Stories: Meet the happy go lucky Adrian Beesley

Adrian Beesley is a happy go lucky 25 ­year­-old with a sharp sense of humour that lights up the room! He’s a very personable young man and likes to keep social with his friends and get involved in the community.  He is a proud member of the HDSA Grad Group and actively participates in all of their events. Although he can be a little quiet in big groups, he likes to take upon an engaging role and feels proud to have special responsibilities.

He is a proud employee of Swiss Chalet three mornings a week, and works at ARC on other days. One of the main goals set by the Have a Heart for Down Syndrome foundation is to provide his peers with similar work opportunities that focus on their capabilities and provide the sense of responsibility and self-fulfillment they deserve, which many of us often take for granted.

Adrian has worked hard to manage a speech disorder called Apraxia; he has also dealt with several major health challenges: open­ heart surgery, a liquid diet for several years, and having a pacemaker. Amazingly, He’s never complained about any of his hardships and challenges, facing them with great patience and remarkable positivity. Despite all his challenges Adrian is a big sports enthusiast, taking part in many sports activities including swimming, skiing, biking, bowling and soccer.

Adrian is an avid family man! He adores his older brother and sister and they are very involved with his life; he has brought much joy to his family.

21 stories: Meet Benjamin Thomas; the athletic little funnyman

Benjamin Thomas 2Jen Thomas opens up about her Down syndrome experience with her lovely little three year old son: “Benjamin is a funny, athletic and caring little boy.  At the age of three, he has already given our family a new perspective on life. He finds joy in little things and has taught us to slow down, appreciate all of the world’s wonders and laugh with our whole bodies.

Ben was born to the Thomas family on January 3, 2013 at St. Michael’s Hospital.  We met a wonderful group of people through the Down Syndrome Association of Toronto and Circle21, where we learned about Ds and all the amazing things our children can do.  Benny spent his first year at Surrey Place, Silver Creek and fun-filled playgroups.

We moved to Milton in January 2014 and became a part of Halton Down Syndrome Association. We have been so fortunate to be a part of this community over the past two-and-a-half years, and we are grateful for the incredible support it has given us.  We have made lifelong friends through the organization and have loved watching Ben grow and learn with his amazing peers. The establishment of Have a Heart for Down Syndrome foundation continues to lay groundwork for a united community and lifetime support.

Benny beams with pride when he accomplishes new goals;  He has shown us that he can truly do whatever he sets his Benjamin Thomasmind to.  He works hard at Speech, Occupational and Physio therapies, as well as Oral Placement Therapy and Anat Baniel Method.  He’s recently discovered a love of bike riding, and playing sports, including baseball, golf and basketball.  Ben also loves animals and has an extra special place in his heart for dogs and “neigh neighs.”  To Benny, most problems can be solved with music and a bum wiggle, and he is the first one to step in with a hug when someone is upset.

Ben’s incredible strength and resilience shone through with his open-heart surgery when he was 20 months old.  He was laughing with the nurses and eager to get moving well before we had recovered from the ordeal!  He is extremely proud to be a new big brother and is already an amazing role model for his sister, Audrey.

Ben and his friends with Ds have truly shown us that every child is special and will not be defined by a diagnosis, but by the unique and amazing characteristics that make them THEM.”

21 Stories: Meet the social Sam Bandiera

Sam has had many wonderful years of involvement in dance, glee club, Special Olympics swimming, soccer and basketball where she has made many friends with both athletes and volunteers.  She has the ability to organize an event with you after just one meeting!  Her social skills have always been her strong suit, so in high […]

21 Stories: Meet Jake Hardy

Meet Jake Hardy, a charismatic young man about to turn 21 years of age this coming October. Jake is the face of the Have a Heart for Down syndrome upcoming golf tournament “Sink One for Jake”, inspiring us to help provide him and his peers with employment, education and growth opportunities to live a full and fulfilling life.

When Jake was born two decades ago there was very little awareness and knowledge about Down syndrome. Joanne remembers this was a time when kids born with Down syndrome were often institutionalized and isolated from social interactions. Her and Jake’s father Randy had little support when they got the news from the Dr.:“it’s not good” he said, your little boy has Down syndrome. This diagnosis was met with much uncertainty and little hope for a prosperous life for their newborn son.  Having two young daughters at home, Joanne and Randy took their little boy home, with bravery and faith for the future.

Almost 21 years later Jake has brought unparalleled joy to the family, with his excitement and zest for life coupled with his sensitive and empathetic nature. A journey that started with fear and uncertainty resulted in an unexpected blessing that brought the family closer together.

Getting involved with Down syndrome organizations such as the Halton Down syndrome Association (HDSA) provided the family with a blanket of support and a united community to share moments of joy and moments of hardship together. They formed life long bonds with amazing people forging forward on a similar journey together.

Today Jake is the life of the party! He is well-known and loved around his Oakville hometown community. No one can deny that he is a born “people-person”, always having fun and always smiling!

Jake is a HUGE fan of The King, the one and only, Elvis Presley, and you can bet he’s got the moves to prove it!  His Mantra is “Yeah Baby”, which accompanies a “thumbs up” gesture, with persistent optimism and positivity wherever he goes. He loves the ladies and cannot get enough Coca-Cola to quench his thirst, which can also be said of his thirst for life.

Having just graduated from the Oakville Trafalgar high school, Jake’s presence made a big change with his school-mates, who have been supportive, inclusive and eager to accept and learn about their ever lovable classmate and his VIP peers. Their enthusiasm extended to awareness campaigns with other schools and have earned them a $3,000 prize from The Halton Down syndrome Association for their World Down syndrome Day campaign. Jake and Sam, his prom date and long-time family friend, were crowned prom King and Queen by their school peers and they in return got to present their school mates with the prize on behalf of the HDSA at an assembly at the end of the school year.

Jake continuously teaches his family, his school peers and everyone who comes across his path to celebrate individuality and the value of one’s abilities within the scope of their own existence and life path.

Join us on the golf course July 20th as we #SinkOneforJake to celebrate life and embrace this lesson for generations to come! Register HERE.