This coming week we are highlighting very special athletes affiliated with the Special Olympics NC! We are so excited to highlight these incredible individuals who work so hard in their training to be their best both in their spots and their daily lives! Check in each day to read about each new athlete!
In early March, I had the opportunity to interview Kerry Magro, the keynote speaker at The Autism Conference, sponsored by Commonwealth Autism in Richmond, Virginia.
What struck me about Magro when I met him was how personable, warm, and friendly he comes across. He speaks passionately about anti-bullying and has compassion for all individuals. He began his talk saying, “This topic [bullying] is very dear to my heart because of my journey of autism and being diagnosed at 4 ½ years old. I was actually completely nonverbal until the age of 2 ½ years of age.”
Kerry was very direct in his message that bullying needs to end now! And after his talk, I sat with him in the hotel lobby of where the conference was held. He explained to me how his parents pushed him to where he is today as an international speaker, advocate, and bestselling author. Magro said his parents would hone-in on his extreme interests as an early child to get the desirable behavior or outcome. The reason for his continued success come from a very altruistic grounding. In his words, “This is why I do what I do. I do it to meet people such as yourself, to get to meet some of the amazing advocates. People who have passion for their children, their students, their family members. I get to see people who have gone through similar stories of what I went through. Being able to be there for them every step of the way with resources or to get to share my personal experiences in hopes that one day being able to impact the lives of someone else. It feels like a dream come true.”
Magro became an advocate when he was in his undergraduate work at Seton Hall University. He stood up in his class and talked to them about what it is like to have autism. Not knowing what to expect, the class stood up and gave him a standing ovation. It made him realize this is something he wanted to do full time. He started speaking locally in New Jersey and did so throughout college. After he graduated, he received a scholarship from the National Speakers Association to become a professionally certified speaker and got to travel around the country speaking. It not only gave him the opportunity to talk about autism, but also led to “more personal passions” such as bully prevention, inclusion, storytelling, and innovations.
And in the spirit of Project: Just Like You, I had to find out what he enjoys doing in his spare time! “I love going to museums, and a general interest in seeing state capitals,” he said. Magro finds himself to be a very touristy person and exploring the town. And he has a love of “R&B hip hop and oldie music.” He got into the hobby through music therapy. He found something soothing about music when he felt sensory overload.
As for his future plans? Magro explained that he is writing his first children’s book, (it’s under wraps for the time being) and will continue speaking. He also works with businesses and health care providers to hire for special needs communities. Magro has a very specific passion for this. “Most people, especially consumers today, want to buy products from companies that hire people from diverse backgrounds. Not only different nationalities and those who come from different cultures, but also with a wide range of special needs and disabilities as well.” He started with American Express two years ago for Autism Awareness month and as soon as the YouTube video went up, according to Magro, it “spurred a movement to other businesses that you need to do this. We have spoken with J.P. Morgan, we are speaking with Wyndham Destinations Networks for a second time and Bank of America.” Magro continues, “We are hoping to make this something where we can talk to every business about making a positive impact and there are a lot of opportunities to make this available.”
Molly McMunn Korte is the founder and Executive Director of Project: Just Like You, a Virginia-based Non-profit company. She keeps herself busy with her 3 children, her youngest having Autism Spectrum Disorder. Korte is a frequent guest speaker, blog writer, and makes frequent media appearances to spread her passion: raising awareness on what people have in common. Doing so inspires inclusivity and helps make this world a better place for everyone.
Project: Just Like You is proud to present Annabelle! This is her story.
Annabelle is 3 years old and is diagnosed with tracheoesophageal fistula, commonly refereed to as EA/TEF.
According to her amazing mom, Emily, “Annabelle was born with esophageal atresia and tracheoesophageal fistula, commonly refereed to as EA/TEF. It essentially means her esophagus did not connect to her stomach and instead there was an abnormal connection between her esophagus and trachea. She had surgery to repair at two days old and spent a month in the NICU recovering. As a result of her condition, her esophagus didn’t work normally for her until very recently. She couldn’t eat any solid food until age 2 and had episodes of food being stuck almost daily. She has had 4 procedures to stretch her esophagus to normal size. She’s also extremely susceptible to respiratory illness and had pneumonia nine times in the first two years of life.
Lucky for us, Annabelle is doing really well, but more importantly, she is as silly and sassy as any other three year old. I call her angel face because when you look at her you can see her kindness and goodness shining through. She loves being a big sister and takes being a dog owner very seriously. Every night she insists on tucking in our dog. She was loves learning about the animals on her favorite show The Octonauts and was Captain Barnacle for Halloween. Her most favorite thing to do is visit with her cousin’s horse who she also claims is her horse.”
Annabelle, may your kindness and goodness always shine through. May your love for learning never stop. May your life be a testimony of strength and courage to everyone you meet. You have endured so much in your short span of life and yet your joy and happiness far exceed your struggles. Thank you for being a source of strength for us all!
Annabelle is #JustLikeYou
Project: Just Like You is proud to present Nolan! This is his story.
Nolan is three years old and diagnosed with Desmoid Fibromitosis this past May. It is a rare tumor (1 in 6,000,000) that has presented itself on his left side lower face.
Desmoid fibromitosis, also know as aggressive fibromatosis, is a rare condition marked by the presence of desmoid tumors. Desmoid tumors can arise in virtually any part of the body, and are tumors that arise from cells called fibroblasts, which are found throughout the body and provide structural support, protection to the vital organs, and play a critical role in wound healing. These tumors can occur in anyone at any age. Although not technically considered cancer because they do not metastasize, they mimic and are treated the same way that cancerous tumors are aggressive, fibromatosis is locally aggressive.
According to his super mom, Shannon, “After trying some experimental drugs that were unsuccessful in even slowing the growth of the tumor, Nolan recently started traditional chemotherapy in hopes to slow and then hopefully shrink the tumor until it is small enough to be surgically removed.
Nolan enjoys snuggle time with Mom while we watch Disney movies. He is a jumper. He loves jumping around, jumping on trampolines, and doing gymnastics. He has fun playing with his brother and friends. He likes being outside playing or helping Daddy out in the yard. He’s three, so he’s happy doing many things. He LOVES his pets, especially Yeti, our Maine Coon cat that will let him do just about anything to her, but he is so gentle with her. Like the rest of the family, he enjoys doing puzzles. Who doesn’t!?!?
Nolan is awesome because of his personality. He is so loving, running and jumping into our arms when we get home and telling us he loves us and misses us. And snuggling up on the couch with Mom, Dad, or his brother Liam. He is so jovial and has a great laugh and is so cute!! The ladies swoon over his beautiful blue eyes and long dark eyelashes. Nolan is up for anything, including going down the big slides at waterparks and riding some rides outside of the kiddie section of amusement parks. He loves to listen to Disney music, and our little game is to guess what movie it is from. He is pretty darn good at it!! Maybe, just maybe, one day he will be better at it than Mommy. Nolan is a joy to be around and is great at making people laugh and smile. He is definitely a class clown, pretending to fall down just to get the laugh. He is an incredible kid who is going through a difficult journey but is handling it like a champ! Nolan equals Awesome!!”
Nolan, your zest for life is unstoppable! We love that you are silly and find humor in all situations. We love that you are filled with energy and are so loving towards others. Always keep that strong spirit!
Nolan is #JustLikeYou
Project: Just Like You is proud to present Sean! This is his story.
Sean is 24 years old and diagnosed with Down syndrome. There are three sets of the 21st chromosome. Which means there are developmental delays and health issues. According to his wonderful mom, Brenda, “We received a prenatal diagnosis at 4 months and did much of our research before he was even born. Books and doctors informed us of limitations, but our parent support network gave us positive information and hope. We relied upon these families to give us guidance during those critical early years.
When Sean was a toddler we visited a physician who changed our lives. His words were simple: “Decide what you want for your child and don’t take no for an answer”. This became our mantra and our guiding force. We formed a long term plan – we wanted Sean to socialize and be educated alongside his neighborhood peers, which was not common at the time. We wanted him to learn how to live independently in the real world. We faced an uphill battle but refused to compromise, and we were ultimately successful.
Our mantra took on increasing meaning. It became our family philosophy. Sean grew up feeling no limitations, and became someone who also “didn’t take no for an answer”. He had goals, but was willing to work hard to achieve them. He wanted to play sports in high school, so in addition to Special Olympics, he made the school wrestling team. He earned the highest award in Boy Scouts, his Eagle Scout award. He wanted to go to college, so he applied to George Mason University’s LIFE program and was accepted. He graduated in 2015. He wanted to be a weatherman, which was a challenging goal, but he persisted and ultimately worked at an internship for a local meteorologist. He wanted to live independently, and he now lives in a house with four friends. He loves hanging out “with the guys”, planning football parties, and living his life to the fullest. Next on his list: getting married to his beloved girlfriend Tasha. I have no doubt that he will make his dreams come true. We couldn’t be more proud!
Sean enjoys football, basketball, soccer, meteorology, drinking Corona, hosting football parties, and hanging out with friends, Spending time with his girlfriend Tasha, and listening to music. His favorite artist is Shakira. My child is awesome because he knows what he wants and doesn’t let anyone limit him.”
Sean, you are an incredible model of how life looks when one doesn’t accept “no” for an answer. You live out your dreams and goals to the fullest and your life is a shining light to all those around you. Now that you have graduated college, live independently with friends, we can’t wait to for the next chapter of a possible marriage to your girlfriend, Tasha! You are living life in an incredible way because you and your family always believed you could!
Sean is #JustLikeYou
Project: Just Like You is proud to present Joshua! This is his story.
Joshua is 7 years old. He was diagnosed with Type 1 Diabetes (aka Juvenile Diabetes) when he was just 11 month old. Type 1 Diabetes is an auto immune disease and in basic terms this means that his body has fought against itself and has killed off the cells that make insulin. Type 1 Diabetes is not caused by anything we did or he did. It is not caused by what you eat or how active you are. Joshua will never out grow this and there is nothing currently to cure type 1. Everybody needs insulin to survive, so his is artificial since he can no longer produce it.
According to his incredibly strong advocate mom, Shannon, “Finding out that Joshua had type 1 Diabetes saved his life. At only 11 months old the normal signs and symptoms of Type 1 were excused by other things. He was losing weight, but had started walking so he was losing the baby fat. He leaked through diapers, so we thought he had out grown his current size. He was cranky, but cutting teeth. He had a fever but we were told he had a virus. On Feb 13, 2010- Joshua woke up with vomit and could not support himself. He hit his head the night before on a fall, so my husband rushed him to the ER.
Several hours later with a clear CT scan, they were about to release him. Thankfully another doctor came in and called for a blood test. This saved his life!
Joshua wears an insulin pump today, tests his blood sugar 10-12 times a day, and requires insulin. Before wearing a pump he received several shots a day. He also wears a monitor. These life saving devices have to be changed weekly. Everything in his daily life affects his blood sugar. It is a balancing act on a very tight rope.
Joshua loves to swim, fish, play soccer, read, and just about anything else. He loves life. He loves music and he wants to learn to play the piano. He loves pizza, rainbow sherbet and a good salad. He can eat anything as long as he takes his medicine. He loves to play with his big brother and ride his bike and he loves cub scouts!
He is amazing because he doesn’t let Diabetes stop him. He is friendly, funny, loving, kind and brave. He tests his own blood sugar most of the time and has began doing pump changes. He also eats when he doesn’t want to. He has to be tested 2 times every night at midnight at 3 am, and never complains.
He as spoken to Senators and Delegates and the Governor of VA working on Diabetes Laws in VA. He participated in an artificial pancreases trial earlier this year for 3 days. He doesn’t know the word quit! We are so proud of him and all he has done in his short 7 years. We love him so much and are so thankful for the life he gets to lead, even when it is tough and confusing and hard. The outcome could have been so different, so we try very hard to remember this daily.”
Joshua, may you never learn the word “quit.” May you continually work for the betterment of all those who have Type 1 diabetes. We love that you stay strong in work and play. Joshua, you are a fighter and we admire that!
Joshua is #JustLikeYou
Project: Just Like You is proud to present Penny! This is her story.
Penny is 10 years old and diagnosed with Down Syndrome. According to her incredible mom, Amy Julia, “All children with Down syndrome experience some degree of delayed development, physically and intellectually. That said, the range of possibilities for delays and for growth and learning is quite broad across the population. Most kids with Down syndrome take longer than typical children to learn how to walk and talk and read, for example.
Penny enjoys reading, ballet, spending time with her friends, playing piano, weddings, and playing with babies. My child is awesome because she is funny and kind and thoughtful. As soon as she hears of someone in need, she writes them a note to offer her care and support.”
Taken from a piece Penny wrote by herself, with a little help from her mom,
“Some of my favorite books are Ramona Quimby Age 8 by Beverly Cleary, Gooney Bird Greene, McKenna Ready to Fly, and Superfudge by Judy Blume. I like these books because they all have in common girls and boys my age who do things I like to do like gymnastics, reading in bed, going to school, and being an older sibling.”
According to Penny, on her thoughts of having Down Syndrome, “I almost forgot to tell you about Down syndrome. My mom and dad thought it was going to be scary because they thought Down syndrome would hurt me and other people. But it actually was not scary and I did not get hurt. I have a great life.”
Penny, thank you for telling the world in your own words that of course you enjoy the same activities as your peers! Thank you for enforcing that Down Syndrome is not scary. It’s a part of who you are, and that you are beautiful and perfect just being you. You are an inspiration to us all, Penny!
Penny is #JustLikeYou
Project: Just Like You is proud to present Anthony! This is his story.
Anthony is 3 years old (he’ll be 4 in November.) Anthony is diagnosed with Trisomy 21 or Down syndrome. Trisomy 21 is a genetic disorder that occurs when an individual is born with 3 copies of their 21st chromosome. This extra genetic material causes cognitive delays, developmental delays, and medical issues.
According to his supportive mom, Amy, “Anthony loves all things music. He loves listening to music, singing songs, dancing to music, and playing music! He also loves Elmo and anything to do with Christmas, especially Santa. Anthony is awesome because he has the most infectious, sweet personality. He uses his smile to positively affect people wherever we go. Having Anthony has made me an infinitely better person. I am forced to slow down and appreciate the beauty and value in even the smallest things.”
Anthony, keep living life with your infectious, sweet personality! We love that you are so positive and kind. Keep dancing, singing, and enjoying the beat to the rhythm of life!
Anthony is #JustLikeYou
Project: Just Like You is proud to present Josse! This is her story.
**Josee is part of our global initiative as her story comes from Queensland, Australia!**
Josee is 3 years old. She is diagnosed with Trisomy 21 – the most common form of Down syndrome, at 13 weeks gestation. According to her very strong mom, Joelle, “Trisomy 21 means that instead of a paired 21st chromosome, my child has a triplicate 21st chromosome, in every cell of her body. Trisomy 21 occurs randomly at the time of conception. Because of this extra genetic material children with Down syndrome may have an intellectual disability, speech and language challenges, and take longer to acquire some skill sets. People with Down syndrome now have access to better medical care, access early intervention and ongoing therapies, and are now living into their 60’s. There’s never been a better time to be born with Down syndrome!
My child enjoys singing and dancing, she sings all day! Josee loves playing with her siblings and her beloved dogs, she likes shopping and picking ‘pretty’ clothes, loves eating ice cream, and riding on her bike.
My child is awesome because she has defied the poor prognosis we were given when she was unborn! Josee had an additional condition called hydrops, whereby fluid was accumulating in her tiny body and we were given no hope that she would live.
She is an incredible little girl, so curious about the world and lives every day with an enthusiasm people are envious of.
Josee is fun loving, engaging and energetic. She loves to do all the things any little girl enjoys doing, and her determination and persistence amaze us every day.
Josee, keep defying the odds! Keep exuding your enthusiasm for life. We love that you live with excitement and wonder. You are an example to us all about how to live life with gusto!
Josee is #JustLikeYou
Project: Just Like You is proud to present Gracelyn! This is her story.
Gracelyn Kate is 2 years old. She’ll be 3 next month. She has Trisomy 21 Mosaicism, which means that a percentage of her cells contain an extra chromosome, and some do not. According to her strong advocate mom, Lauren, “Gracelyn LOVES to sing and dance. One of her favorite movies to dance and sing along to is Frozen. She loves puppies and babies. She speaks to everyone she sees when we are out and about. She’s very social! Gracelyn is very smart and knows a little American Sign Language, which helps her to communicate with us! She gives THE BEST hugs and kisses and is super affectionate!”
Gracelyn, we love that you are so affectionate and friendly with others! Keep singing. Keep dancing. Keep bringing joy to all those you encounter!
Gracelyn is #JustLikeYou