Thank you for scanning the QR code on the Walgreens Scannable event poster to learn more about the five Ambassadors! 

 

Meet Taryn! Taryn is 13 years old and has CdLS, but that does not define her as a person. It merely helps explain some of the challenges she faces like motor skills, receptive language, focus, and comprehension. However, she is very expressive in language and storytelling, and is learning math skills fairly well.

Taryn loves music and movies and when you combine them, she’s in heaven (i.e. Frozen, Moana or Annie). Taryn loves animals too, so we have dogs, cats and a guinea pig. Some of her favorite foods are spaghetti, chicken nuggets and peanut butter and fluff sandwiches. Taryn definitely gives us a run for our money some days, but it is so worth it when she figures things out and is so proud of an accomplishment, like riding her balance bike or reading a book for the first time.

We are so grateful for the support and network we have built through the CdLS Foundation. Taryn couldn’t ask for a better group to help her and her family through this journey.

 

 

Meet Whitman! Whitman or Whit is 26 years old and lives in Melrose, MA. He loves to RIDE his bike- a recumbent willed to him from his grandfather. It gives him his physical freedom to cruise the neighborhood and maintain his social connections while singing his happy tunes. Whit is a loyal New England sports fan; he practices his math by calculating points needed to tie or won. He is also tech savvy and enjoys games and communication apps on his iPad … word challenges to weather forecasts to video chats with special peers. Whitman takes pride in his work and never misses a scheduled chore at home or at his program; recycling – to laundry – to yard work – to dishes; he is the most responsible member of the household!

Awareness is empowering … while physical attributes of CdLS are recognizable, it is the more silent traits of the syndrome that can be the most challenging. As a higher functioning individual with CdLS, the struggle to connect with peers is trying; the anxiety can be crippling; the inability to verbally communicate is extremely limiting.

Inclusive cultures take patience, awareness, openness. Inquisitiveness is welcome. Be considerate of situations that may not resemble your own. Invite differences into your life and you’ll grow from the opportunity.

The challenge is real but made easier with understanding and compassion.

 

 

Meet Thomas! Thomas or TNick is 11 years old and lives in Foxboro, MA. His favorite activities include listening to music, playing with his sister, sitting at the beach and being outside. Thomas is a fifth grader at the Campus School at Boston College. He loves school, works hard every day and continues to reach his milestones. You can always count on him to have a smile on his face. He has brought our family many things but most important joy.

We are honored that Thomas has been chosen to be an Ambassador for CdLS and a partner with Walgreeens. He has many connections in the community and is an inspiration and role model to many. Raising awareness about CdLS is important to our family. We hope to bring awareness, acceptance, and understanding within our community. There are many challenges to raising a child with CdLS and having support, connections, and information is vital.

People living with CdLS face many challenges medically, cognitively and behaviorally. They face these challenges with resiliency and strength. Many are nonverbal but will always find a way to let you know what they are saying. Thomas and all with CdLS will continue to be our inspiration.

 

 

Meet Hugh! Hugh, aka Hughie, is a 5-year-old Bridgewater resident. He enjoys playing with cars and trucks, singing and dancing with his sisters, playing with his dog Stella and of course he loves to eat.

We are proud and thrilled to have Hugh as part of the Ambassador program. It is such a great opportunity to spread awareness about CdLS and of course share our amazing little man. Hughie amazes them every day; he brings so much joy to everyone he meets! His smile is infectious and he teaches his family to be better people.

It may sometimes be very hard and scary but it is so much more amazing and rewarding. Our CdLS kids teach us patience, humility, strength and the power of love. They are resilient, strong and capture the hearts of everyone they meet.

Hughie keeps us on our toes and we wouldn’t have it any other way.

 

 

 

Meet Amerah! Amerah aka Piglet, Pocahontas and Cupcake 11 years old and lives in Greenfield, MA. Her favorite activities include playing “row your boat”, spending time with her adoring 4 siblings, drumming, being wrapped up in her favorite blanket and listening to music while drumming, and most of all snuggles. CdLS does not define who Amerah is.

We feel honored to be able to be a part of the ambassador program. It feels like a way to give back, raise awareness and embrace the challenges we have faced and continue to overcome. It’s also a way to share someone we love so dearly with the world.

Amerah is an inspiration to everyone she encounters. She has a smile that will light up a room and a giggle that’s contagious. She is resilient and had beaten all odds even when they were against her. Amerah continues to show us the true definition of patience, laughter, acceptance and love. She’s my rockstar!

Raising awareness about CdLS is important to our family since the complexities of the syndrome are a continuous learning experience and so many are unaware of what CdLS is.

 

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