T-21 Chromosome Classic Golf Tournament
By Robin Gregg
To educate, encourage, and inspire others who are just starting their journey with Down Syndrome. By reaching out to the community and new and expecting parents, we hope to create a positive attitude towards those living with Down syndrome and their families. Kenzie’s Chromosome Crusaders would like to announce their inaugural T-21 Chormosome Classic Golf Tournament is scheduled for Saturday, July 27 at the Mark Twain Country Club.
Macy Johnson, President and Founder of Kenzie’s Chromosome Crusaders, said, “We are so excited to host the tournament in our hometown of Paris, Mo.”
The tournament will be a three person scramble and feature raffle items, door prizes, concessions stands, and prizes for the top three teams.
Funds from this event will be instrumental in helping support their gift baskets and programs that benefit families right here in mid-Missouri and the tri-state areas.
“We have 15 out of 21 sponsorship levels available to accommodate any budget,” said Macy.
The deadline to register is a week before and payment can be made the day of or ahead of time by contacting Macy via facebook or 720-270-9945.
Monroe County residents, Mark and Macy created their nonprofit, Kenzie’s Chromosome Crusaders, to provide encouragement and hope to families of children born with Down syndrome.
Their journey with Down syndrome began in the fall of 2013. Mark and Macy were just another couple excited about their third pregnancy and to go in for their twelve week doctor’s appointment. This was the day they received their daughter, Kenzie’s prenatal diagnosis of Down syndrome.
“I was excited for the appointment because we would also find out if we were having a boy or a girl. At the appointment the doctor walked in with a piece of paper and I immediately knew something was wrong. She told us we were having a little girl and that she was sorry but our test came back positive and that our little girl would most likely be born with Down syndrome. I was heartbroken and immediately began crying. We were handed that piece of paper with the test results, given our options and told that they would call us the next day to see what we wanted to do. That sheet of paper was all we left the appointment with,” said Macy.
Not knowing anyone with Down syndrome, the Johnsons were scared and didn’t know where to turn for information. Macy actually thought about termination but thanks to a few quick Google searches and a good support system of friends, family and especially Mark, she realized that people with Down syndrome can live happy and productive lives, much like anyone else.
That night, Mark and Macy made up their minds to continue the pregnancy and not pursue any further testing. Although still nervous about their future, they were once again excited for their baby girl and a little sister for their two older daughters.
Twenty-six weeks later when Kenzie was born, the labor and delivery nurse was the only person at the hospital that mentioned Down syndrome. She asked the couple, “do you really think she has it? She doesn’t look like it to me.” Feeling a bit lost, Mark and Macy left the hospital two days later with their newborn daughter and no other mention of Down syndrome.
A day or two later, the family took Kenzie to her pediatrician for a check up but there was still no mention of Down syndrome. It was at the next appointment a few days after that when Mark asked the doctor about Kenzie having Down syndrome. The doctor quickly grabbed her computer looking for notes from the hospital about the diagnosis but there were none to be found. Somehow the prenatal test results didn’t make it into Kenzie’s file. The doctor then checked Kenzie for the typical physical features of Down syndrome but because they were not present, she ordered a karyotype, or chromosome study. When Kenzie was around six weeks old, Macy received a phone call with the positive results from the karyotype and it was confirmed that Kenzie had trisomy 21, also known as Down syndrome.
When I asked Macy why they wanted to start their nonprofit, Macy stated, “I knew that after what happened at our diagnosis and after Kenzie’s birth and because of my own thoughts about termination, I wanted to make a difference for other moms. For moms who may be much like myself, and sit in an exam room terrified after getting a diagnosis and have no idea where to look for accurate, up-to-date information.”
In the fall of 2015, when Kenzie was around 18 months old, Macy decided to do something to help other families who had received a prenatal diagnosis. She contacted the clinic where she went during their pregnancy and asked them if they would hand out a letter that she had written to any parent who received a diagnosis of Down syndrome for their child. It was a letter of understanding but more importantly, it was a letter filled with hope and resources. They said yes, right away!
Macy also felt that parents should receive resources at the hospital anytime a baby is born with Down syndrome. So around May 2016, she reached out to Houston Medical Center in Warner Robins, Georgia where Kenzie was born, along with the Children’s Hospital in Macon, Georgia and asked if she could provide them with gift baskets for babies born with Down syndrome. They also both said, yes!
After gathering resources and deciding what items to include, they put together and delivered their first Butterfly Baskets to both hospitals in October 2016. Macy decided to call them Butterfly Baskets because to her, a butterfly is a symbol of beauty and hope and that’s exactly what they want their baskets to represent, just like the babies that receive them.
Each basket is filled with many brochures from national Down syndrome organizations including, the National Down Syndrome Congress and Down Syndrome Diagnosis Network, information on where to find local organizations and support groups, educational and inspirational books; a custom baby blanket, tumbler and onesie all with their “Love Every Chromosome” catchphrase, a baby toy; a hat and bootie set, made by their nieces, a toothbrush set for oral motor skills and a butterfly sun catcher with an inspirational poem that Macy wrote for new parents. And one of Macy’s most favorite items, an awareness bracelet made by Kenzie’s two older sisters, Kaylee and Kelsey.
On October 13, 2016, Macy filed for their nonprofit status and they officially became Kenzie’s Chromosome Crusaders! It really was all in perfect timing because October is also Down Syndrome Awareness Month.
The Johnsons have also started putting packets together for medical professionals that contain information about delivering a diagnosis. Macy’s letter to expecting parents has been upgraded to a prenatal packet that contains brochures and information for families on both national and local resources. In total, the Johnsons have delivered 28 gift baskets and over 120 prenatal and medical professionals packets. The packets have gone as far away as Guam and to both doctor’s offices and clinics as well as directly to parents upon request.
They not only deliver locally, but they can mail their prenatal and medical packets or baskets anywhere in the world by request.
Last fall, Mark and Macy decided that they will once again make Paris their home so they contacted all of the hospitals in northeastern and central Missouri and offered them baskets. Along with the two hospitals in Georgia, they now deliver baskets to six hospitals including Boone Hospital in Columbia, Northeast Regional Medical Center in Kirksville, Hannibal Regional Hospital in Hannibal, and Blessing Hospital in Quincy, Illinois.
On September 11, 2018, Kenzie’s Chromosome Crusaders was officially registered as a nonprofit organization with the state of Missouri. This is an exciting step meaning they can now organize and host on-site and in-person fundraising events within the state!
The Johnson family bought a house and some land north of town and has returned to Paris.
They look forward to continuing their work through Kenzie’s Chromosome Crusaders to help expecting families and our community learn about Down syndrome.
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