What is Down syndrome? According to the National Down syndrome Society’s website, every cell in the human body has a nucleus where genetic material is stored in genes. Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes. Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.
This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. However, each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.
In the United States, one in every 691 babies is born with Down syndrome, making it the most common genetic condition. About 6,000 babies with Down syndrome are born in the United States each year. There are approximately 400,000 Americans who have Down syndrome.
Today, individuals with Down syndrome participate in a wide variety of society and community organizations. They are active in schools, health care systems and work forces. They are also involved with many social and recreational activities within their communities. Individuals with Down syndrome possess varying degrees of cognitive delays, ranging from very mild to severe with most being mild to moderate.
With advances in medical technology, individuals with Down syndrome are living longer than ever before. Just over 100 years ago, children with Down syndrome were only expected to survive to age nine. Thanks to the discovery of antibiotics, the average survival age increased to 19 or 20.
With recent advancements in clinical treatments, especially corrective heart surgeries, as many as 80 percent of adults with Down syndrome reach age 60, and many live even longer. More and more Americans are interacting with individuals with Down syndrome, increasing the need for widespread public education and acceptance in our society.
On February 16, 2014, Billy and Harmony Griffin became the proud parents of Cooper (also affectionately known as “Scooter”). To the surprise of his parents and doctors, Cooper Randall Griffin was born with Down syndrome. Immediately after birth, Cooper was taken to the NICU where he showed signs of Down syndrome.
After blood work confirmed the diagnosis, it was Billy who had to break the news to his anxiously awaiting wife and family. Billy explained, “they all went through a range of emotions – fear, excitement, disappointment, anger and thankfulness”. They had to grieve the child they had expected and focus on the child they had received.
It did not take very long before the emotional rollercoaster came full circle and the family fell head over heels in love with their new bundle of joy. Billy said “the one thing that never waivered was we knew Cooper was God’s perfect gift,” and that “today we are so very proud to be Cooper’s parents and humbled that the Lord chose us to walk this journey together with him”.
One of the biggest health issues little Cooper faced after birth was the fact that he was born with three small holes in his heart. Heart conditions such as this are common for individuals with Down syndrome. Billy and Harmony believe that by the grace of God, these holes healed themselves in just three months after Cooper was born.
Being born with low muscle tone, Cooper had difficulty latching on to his bottle. This was the primary reason he had to spend two weeks in NICU. The hospital would not release him until he was able to eat a certain amount of formula. Billy stated that “had it not been for the eating issue, he could have come home a lot sooner because he and Harmony knew in their hearts that he was ready”. And they were right. Shortly thereafter, little Cooper was on his way home to start his amazing journey.
Cooper receives occupational, physical and speech therapy each week. Billy and Harmony have been amazed at his remarkable progress. That fact that they are “play-based” forms of therapy makes it even better. Cooper is working hard but loving every minute. His parents have “chosen to celebrate his accomplishments and not dwell on the things he has not yet accomplished”.
Along with professional services, Billy and Harmony are so grateful for the many Down syndrome families in the community who have reached out to them. They have answered questions and given his family an opportunity to interact and love other children with the same diagnosis in various stages.
A huge turning point for Cooper came this past summer. When he started walking on his own, he “gained confidence – the more steps he took, the bigger his personality got”. Although his communication skills are still progressing, Cooper is beginning to learn some sign language to get his point across.
Full of contagious smiles, Cooper loves attention and making other people laugh. In fact, Harmony noted that Cooper is often “waving, saying hello to everyone, flirting with the ladies and shaking hands”. His favorite activities include playing in the water, riding in the golf cart and playing with other kids.
Cooper has two brothers, Brice who is 11 and Dillon who is 14. Billy noted that “had it not been for Cooper coming into their lives, he’s not sure that their first two sons would have grown up to be so compassionate to other’s with special needs”. Although it is sometimes easy to want to treat him with kid gloves, Cooper’s family does not cut him any slack. He is just like any other two and half year old – full of love, life, confidence, determination and of course a little mischief.
The Griffin family will continue to advocate for Cooper as well as all other individuals who have been diagnosed with Down syndrome. Their hopes are that awareness will bring acceptance. They know that love has no labels and their goal for sweet boy has been “no limits” since day one.
If you walk away with only one thing from this little guy’s story, remember this – Cooper was placed on this Earth to bring joy and love. Down syndrome is just a label, and Cooper Randall Griffin is an All-American boy who is going to make a huge difference in this great big world.