KIND of the Upstate

06/21/2024

What an amazing experience! We are beyond grateful for the entire team at the Today Show, Hoda and Jenna, Johnsonville, the Grill Dads and the entire crew. Thanks for making this possible for us. We are forever grateful. Here we go! Spreading more kindness and messages of inclusion for all!

Click the link below to watch:

Caroline Giguere and Francie Todd are co-founders of the nonprofit organization KIND of the Upstate that advocates for children with disabilities and promotes kindness towards all children. Their community joins forces with The Grill Dads to surprise them with a block party — and a $45,000 donatio...

06/21/2024

Friday Family Feature

Meet the Williams family and their son, Thomas. Thanks to Thomas’ mom, Jessica for sharing.

Thomas was born on May 10, 2018. My pregnancy with Thomas was largely uneventful. He was our third baby, and everything felt typical. At around 27 weeks, I was measuring a bit small which raised some alarms. My doctors called for more ultrasound scans, but nothing came from it. He was delivered full term weighing 6lbs, 6ounces. At birth, we discovered he had a hand anomaly which included syndactyly and an underdeveloped pointer finger and thumb. This, along with his smaller size, alerted his physicians to a potential genetic condition. A geneticist arrived at our hospital room that same evening to consult with us. At the time, the geneticist was unable to make any hypotheses about what was happening. We left the hospital on day two with no diagnoses and the recommendation to undergo genetic testing.

While we waited for the results of his genetic testing, life went on at home. Thomas slept hard, cried, and feeding him was incredibly challenging. At a visit with our pediatrician, a heart murmur was detected, and we were immediately sent to a cardiology appointment. We learned both Thomas’s pediatrician and cardiologist suspected Williams syndrome. Two months later we received a call confirming this diagnosis from his microarray test.
What is Williams syndrome? It’s difficult to give a short description, but in simple terms, it is a deletion of around 25-28 genes on one copy of the 7th chromosome. This deletion almost always happens randomly, meaning that Thomas did not get Williams syndrome from my husband or me. This deletion happens in 1 in 10,000 people, making it extremely rare. To give some reference, Down syndrome occurs in about 1 in 640 births. Most people have had the pleasure of meeting someone with Down syndrome, not everyone has experienced the joy of meeting someone with Williams syndrome.

A key marker of Williams syndrome is the missing gene “elastin.” The missing copy of the elastin gene is responsible for many of the health challenges that come along with WS, including heart and vessel problems. People with Williams syndrome have similar facial features and share the same extraordinary gifts and unique challenges. Developmental delay and learning challenges are common. Individuals with Williams syndrome describe a feeling that music is a part of their being. Many have a natural affinity for music. They tend to exhibit a trusting and friendly nature and an abundance of love and joy. While each person with Williams syndrome presents differently, there is an unmistakable exuberance and zest for life present in everyone I have met with this condition.

If you have met Thomas, you have seen his contagious joy and trusting nature, as he will easily grab your hand and lean in for a hug. Thomas is nonspeaking, and he also uses some words including “hi,” “hey,” “hug,” and “I love you,” which are some super great essentials. He also uses gestures and a device to communicate. He loves to play the piano and his xylophone and jump around and dance to music.

Thomas has undergone many surgeries at MUSC and here in Greenville at Shriners Hospital and at Prisma. Anesthesia can be tricky for those with Williams syndrome; thus, we have always worked with cardiac anesthesiologists who have been wonderfully careful and skilled in their practice. Currently, he is followed by several specialists, and we do all the therapies. Thomas also attends a therapy-based preschool with the most attentive and kind humans.

Parenting a child like Thomas has expanded our world. I had no idea what an adventure he would take us on as we have met incredible people across the United States and the globe in our efforts to better understand and support him. Life with Thomas has been far more interesting and vibrant. In this local community, we have had the pleasure of witnessing how Greenville cares for the most vulnerable. Have there been days where our pain and exhaustion make me wish I could replace those 25 missing genes? Yes. But there are more days I thank God for this transformative experience and for Thomas who is a brilliant, joyful, light in our lives.

Disability is part of being human. It should be included, understood, and embraced. If you see us out and about, please ask us questions, and do not worry about whether it seems awkward. Curiosity fosters connection. Differences can feel uncomfortable at first, but if you push through that discomfort, you get to experience the magical love that is life with Thomas.

We are so grateful to KIND for all their efforts and for the opportunity to share our story.

06/21/2024

TODAY

06/18/2024

Disability is a part of humanity. Just like any other human condition such as age, race, cultural backgrounds and gender, it should be included, understood and embraced.

06/14/2024

Friday Family Feature

Meet Avery Joy and her family. Thanks to her mom, Abbey, for sharing.

Avery Joy was born on October 29, 2016 as we were moving into our first family home.

She was so beautiful I remember thinking “How could someone so perfect be mine?” She had her first seizure at 4 months old. It sent us down the rabbit hole of what caused the seizures. We pushed for answers and she ended up being diagnosed with a rare, genetic disorder called Adenylosuccinate lyase deficiency. The doctor didn’t have much information on this rare disorder and told me not to google it. I did. It was heartbreaking, but I refused to accept the worst.

She started therapies, worked on seizure control, and we began to get all of the things we needed for a good life for her. We found the best doctors and started the 6 hour trip from Lousiana to Houston Texas, taking her to Texas Children’s Hospital.

We connected on social media with other children and families around the world. It gave us such comfort and hope. We decided that if we had seven days or seventy years with our perfect daughter, that we would live life to the fullest. And that we have. She has been to summer camp, gone zip lining, taken horseback riding, graduated kindergarten, rolled in a 5k, gone to Disney, made friends and danced at dance recital.

Over the years, we realized that even though Avery had ADSL deficiency, epilepsy and a host of other diagnoses, they didn’t have her. That we would continue to find ways to fill her life with love and joy, and in turn, she has done the same for us and all others she comes into contact with. She embodies joy. He brings light where ever she goes. She is perfect in every way. Even through pain, trials and hospital stays, she still finds ways to bring a smile to her face and give glory to God.

After seeing how other children would ask questions, be curious and almost afraid of her at times, I was inspired to write children’s books on disability and inclusion. I wanted to teach others how to have those conversations with their children, so she is better understood. She loves to have friends talk to her and include her and she deserves it, as do all those with disabilities. She is different, not less. We have started sharing more of our daily life on Instagram and have enjoyed connecting with so many people who understand and who want to make the world a more inclusive place for those with disabilities.



Avery Joy has the best dad, who is wrapped around her finger, and big brother in the world. Her brother, Tommy, always selflessly and patiently helps with her care without being asked. She in return, goes to all of his games and events and loves to listen and cheer him on. We are grateful to be allowed to share even a small part of our lives and journey. We encourage you to always look for the joy in the journey of life, as we believe there is always Joy to be found.

06/10/2024

06/03/2024

Friday Family Feature (a few days late!)

Meet James. Thank you to his mom, Sally, for sharing. ❤️❤️

They say big things happen in threes. In a month’s time in the summer of 2019, my husband and I found ourselves in a world of change. I found out I was pregnant and two days later I lost my job. We were surrounded by moving boxes as we were in the middle of selling our first home and buying our lot to begin building our next.

It was my first sonogram appointment when we found soft markers for Down syndrome. After genetic testing at my OBGYN’s office and more in depth testing performed at the hospital, it was confirmed on November 1, 2019 that our baby would have a 98% chance of being born with Down syndrome. Our knowledge of this genetic condition was as bleak as what you would discover should you put in a Google search. We were shocked, scared, and questioning how we would ever be prepared enough to care for a child with special needs. I was only 29 at the time of diagnosis which shocked me even more.

From that point forward, I was deemed a high risk pregnancy. I required bi-weekly appointments (sometimes more), as well as an echocardiogram which passed with flying colors. My pregnancy was great despite all the extra appointments. It was my first pregnancy so I think that gave me an advantage to not have a comparison. The only thing that bothered me was having the genetic counselor call me weekly to ask if we were still wanting to keep the baby. At the time, South Carolina’s abortion law was set at 22 weeks gestation. I stopped answering after the second phone call.

On March 18, 2020 (the day after the world shut down), our son James was born. After a three week stay in the NICU, we brought him home on Good Friday. He was and still is every bit of an image of hope. In his four short years of life he has helped me to advocate for those with special needs. James’ law (SB4597) was passed unanimously in both the House and the Senate and signed immediately into law in May 2022. This law protects those with intellectual or physical disabilities from being discriminated against when an organ transplant is needed/available. I joined a small group of moms that same year to begin the journey of bringing the first GiGi’s Playhouse to South Carolina - a nonprofit that provides free educational, therapeutic-based, and career development programs for individuals with Down syndrome. It will open its doors later this year! If not for losing my job and being pregnant with James, I would have never taken my passion for art full-time. This led me to a new path of advocacy. It’s a feeling unlike any other when your passion and your purpose come together.

Josh and I learned early on that we were the sole proprietors in how we allowed others to view our child who was deemed “different”. We either let it define him or we let it be a small part of his world. I learned how to allow pain to coexist with peace in those first weeks after receiving James’ diagnosis. In my opinion, that is the richest form of being in God’s presence. It showed me the power that I held to shift the narrative and walk firmly in this new path of the unknown. I had no idea where I was going, but I was determined to move forward in a positive motion. I would not allow myself to be weighed down by the outdated ideas and speculations of what society was taught to be Down syndrome. I wanted to create a new wave of reality within my group of friends and family which I believed would cause a ripple effect to everyone that surrounded us. I chose to live in the light and live by example. This has given our son a chance to be seen in a way that is natural, unscathed by pity and blessed with opportunity and understanding.

There are still many things in this world regarding human rights that need to change that, if not for James, I would have never considered prior. I have no doubt though that he will help make those changes. To say that we are blessed would be an understatement. James set the tone for our parenthood journey and for that we are so grateful. We truly have the best seat in the house getting to watch our boy change the world every day. What an honor.

05/28/2024

Would you like to purchase a KIND T-shirt?
Send us a DM or comment below.

We have tons of youth and adult sizes:

Youth XS - Youth XL $15 per shirt

Adult Small - Adult XXL $20 per shirt

⭐️ We offer local pick up. We are also happy to send shirts via USPS.

05/17/2024

Friday Family Feature

Introducing Calvin Poindexter. Thanks to his dad, Jeremy, for sharing.

I am a single dad of two children, my son, Calvin (17) and daughter, Adia (6). Calvin’s sister, Adia, is a wonderful sibling to him. She is learning a lot about his disabilities as she continues to get older. In addition to his primary diagnosis of Down syndrome, Calvin has autism, OCD, ADHD, anxiety disorder, and emotional dysregulation. I always tell people that he has trouble navigating the world. He does not like transitions, but usually does well once he is used to an environment. He has always received good reports from school, but we do a lot to make sure he’s comfortable when he has changed schools.

My fiance summed it up perfectly when she called him our “lovable grump.” He can have a rough exterior, but when you are able to get through that, he has the sweetest heart. I love that the most. He loves hugs, and I’ll give him as many as he wants.

Calvin was born Feb 8, 2006. He had a pretty great childhood. He attended the Meyer Center before going to East North Street Academy and he’s now attending JL Mann.

Although Calvin sometimes struggles with the world around him, he can find ways to stay busy and enjoy himself. He LOVES to sing and dance. He also thinks the world revolves around him. In 2019, as a Children’s Miracle Network Ambassador, he was invited to the Miss South Carolina Pageant. Calvin LOVES his pageant girls. The pageant was bringing a few of the kids on stage to celebrate the charity work the pageant had done. The kids were just supposed to stand there with the newly crowned Miss SC Teen and the outgoing Miss SC and Miss SC Teen. Instead of standing there, Calvin danced. The crowd loved it. Of course, their cheering egged him on.

He plays in Special Olympics Soccer, and sometimes swims. He is also in dance classes, and loves performing more than practicing. The last two years, he’s been the Clemson Men’s Soccer honorary captain and he really enjoys the game and the crowd.

Calvin is a wonderful son and I am so proud of both him and my daughter, Adia.