- Phone: (904) 686-8515
- Email: contact@teachrare.org
We are honored to see REAWAKEN: Finding Hope, Purpose, and Joy Through Life’s Unexpected Journey featured in the latest edition of RARE Revolution Magazine.
Written by Teach RARE co-founders Richard Earl Poulin III and Judy Wei, REAWAKEN shares their family’s journey through ...Rylae-Ann’s AADC deficiency diagnosis, groundbreaking gene therapy, recovery, education, faith, and advocacy.
Thank you to RARE Revolution Magazine for helping rare families feel seen, heard, and connected. Every story shared strengthens our collective voice and reminds families that they are not alone.
All proceeds from REAWAKEN support families affected by rare diseases and special needs.
Read the latest edition: https://editions.rarerevolutionmagazine.com/html5/reader/production/default.aspx?pubname=&edid=a879f992-d7b6-4577-a1e2-3ba26643b60c
Learn more about the book: https://www.amazon.com/dp/B0HB9JJP8Q
RSV SEASON MAY BE APPROACHING OR ALREADY HERE IN YOUR AREA!
For families raising children with AADC deficiency, RSV is something we need to take especially seriously.
RSV is a common respiratory virus that often causes cold-like symptoms. However, for babies, young children, and ...children with complex medical needs, it can lead to serious complications, including bronchiolitis, pneumonia, and hospitalization.
Why are children with AADC deficiency particularly vulnerable?
Many children with AADC deficiency experience low muscle tone (hypotonia), difficulties swallowing, impaired airway protection, and challenges clearing mucus. These symptoms can increase their risk of respiratory complications, especially if they have a history of aspiration or recurrent lung infections.
As parents of a child with AADC deficiency, we know how quickly a seemingly ordinary respiratory illness can become something much more serious.
KNOW YOUR LOCAL RSV SEASON!
RSV does not follow the same seasonal pattern everywhere. In some countries, cases increase during colder months. In tropical regions, including parts of Southeast Asia, RSV activity may rise during rainy seasons.
Check with your local pediatrician, hospital, or public health authority to find out when RSV typically peaks in your community. Don't assume the RSV season is the same everywhere!
7 WAYS TO HELP PROTECT YOUR CHILD
1. Practice good hand hygiene. Wash hands frequently and encourage everyone who interacts with your child to do the same.
2. Avoid contact with sick individuals. Even a mild cold in another person can become a serious respiratory infection for a medically vulnerable child.
3. Clean frequently touched surfaces. Toys, tablets, doorknobs, and therapy equipment can all harbor germs.
4. Be mindful of crowded environments. During periods of high RSV activity, consider limiting unnecessary exposure, particularly in poorly ventilated indoor spaces.
5. Discuss RSV prevention with your doctor. RSV immunizations and preventive antibody treatments are available for certain age groups and risk categories. Ask your child's medical team what is appropriate and available locally.
6. Have a respiratory care plan. If your child struggles with mucus clearance, swallowing, or aspiration, discuss airway clearance strategies, feeding precautions, and when to seek medical care with their healthcare team. We used saline solution with a syringe, nasal sprays, nebulizer, inhaler, and decongestants.
7. Recognize the warning signs. Watch for rapid or difficult breathing, chest retractions, unusual lethargy, dehydration, worsening feeding difficulties, or changes in oxygen levels if monitored. Blue or gray lips, pauses in breathing, or severe breathing difficulty require emergency medical attention.
A MESSAGE TO OUR AADC COMMUNITY
We cannot protect our children from every virus, and we certainly cannot keep them in a bubble forever. Our children deserve opportunities to learn, play, explore, and enjoy life.
But awareness and preparation can make a meaningful difference.
Know your local RSV season. Know your child's vulnerabilities. Have a plan before symptoms appear.
And please share this reminder with other rare disease and special needs families. A little awareness today may help prevent a serious complication tomorrow.
Together, we can keep our community informed, prepared, and supported.
View RSV hospitalization data for children and adults.
www.cdc.gov24/364 In the Light is an intimate documentary series that illuminates the daily lived experience of rare disease. Each episode follows a different person through the unfiltered rhythms of everyday life, from morning routines, school and work to appointments, caregiving, relationships, and the ...moments of joy in between.
Because rare disease is more than a diagnosis. It’s a life in full.
Meet the patients, caregivers, families and communities featured in In the Light, a 24/364 docuseries about life with rare disease beyond Rare ...
24364.lifeJust as Rylae-Ann was finally getting back into her school routine after recovering from a lung infection and severe bronchitis, Bangkok received nearly 300 mm of rain in 48 hours. Roads flooded, schools closed, and suddenly we were back to learning from home.
But if raising a child with ...AADC deficiency has taught Judy and me anything, it is adaptability.
So PT became “gym play.” The #BangkokFloods became a literacy lesson. A rainforest diorama turned into science class. We practiced presentation skills, worked through math, squeezed in family lunch between my meetings, and somehow kept learning, laughing, and moving forward.
Rare disease families become pretty good at changing plans. Therapies get canceled. Kids get sick. Development happens on its own timeline. And sometimes, apparently, your street becomes a river. 😂
We cannot always control what happens around us, but we can decide what happens next.
I share more about our unexpected week and what it reminded me about resilience in my latest AADC News column. ❤️
👉 Read Now: https://aadcnews.com/columns/rare-disease-family-showcased-adaptability-floodwaters-rose/
#AADCDeficiency #RareDisease #RareDiseaseFamily #Resilience #Adaptability #SpecialNeedsParenting #InclusiveEducation #Family #TeachRARE
Columnist Richard E. Poulin III's home became a classroom last week as rains drenched Thailand and the floodwaters encircled his house.
aadcnews.comDenny has specialists and a chance for a new lease on life with the gene therapy treatment, while his friends wish him the best of luck and a very happy birthday.
Denny Ladkani lives with Duchenne Muscular Dystrophy, a rare genetic disease that causes progressive muscle degeneration and weakness throughout the...
www.wcjb.comA rare disease doesn't mean everything has to be unique or special. Sometimes typical and normal are also greatly appreciated.
A Florida mother of one tells PEOPLE she is determined to give her son, who has an ultra-rare genetic disorder affecting fewer than 100 kids...
people.comReawaken has received the Literary Titan Book Award.
This recognition helps amplify a story rooted in rare disease, gene therapy, family, resilience, and hope.
We are grateful to everyone who continues to support our mission of helping rare disease families feel seen, informed,
🏆The Literary Titan Book Award🏆
We celebrate #books with captivating stories crafted by #writers who expertly blend imagination with #writing talent. Join us in congratulating these amazing #authors and their outstanding #novels.
#WritingCommunity
https://wp.me/p3cyvH-Wrm
One of my favorite parts of The Rare Journey Series is seeing science, family stories, and imagination come together through the incredible artwork of @lomakina.space . 🎨🧬
From AADC deficiency to Friedreich’s ataxia and now Duchenne muscular dystrophy, Anna has created a visual ...world that makes complex science feel approachable, warm, and exciting for young readers.
But look closely. 👀
Each illustration is more than simply beautiful. Hidden throughout the pages are little Easter eggs inspired by the real families behind each story. A favorite activity. A meaningful place. A family memory. A tiny detail that might seem ordinary to most readers but means everything to the people whose journey inspired the book.
That is what makes Anna’s artwork so special.
Every page helps teach the science, but it also reminds children that behind every rare disease are real people, real families, and wonderfully unique lives.
We are incredibly grateful to Anna for helping Prof. Hong and the red panda come alive, one rare journey at a time. ❤️
Which cover is your favorite?
#RareDisease #rarediseaseeducation #childresbooks #inclusiveeducation #rarediseaseawareness
📚 Book 3 in The Rare Journey Series is here!
Prof. Hong Explores Duchenne Muscular Dystrophy combines accessible science with Betty Vertin’s real family story to teach children about DMD, disability and inclusion.
Paperback & Kindle:
#DMD #RareDisease
Join me, Prof. Hong, on another unforgettable adventure in the Rare Journey series as we explore Duchenne muscular dystrophy, also known as DMD. Our...
www.amazon.comWe are proud to announce the third book in The Rare Journey Series: Prof. Hong Explores Duchenne Muscular Dystrophy. #duchennemusculardystrophy #raredisease #therarejourneyseries
📚 The third book in The Rare Journey Series is officially here!
We are proud to introduce Prof. Hong Explores Duchenne Muscular Dystrophy, inspired by the real-life journey of fellow Bionews author Betty Vertin and her extraordinary family.
Betty is a mother of seven, a writer,... an advocate, and a caregiver to three sons living with Duchenne muscular dystrophy: Max, Rowen, and Charlie. Their family’s story is filled with challenges, but also with love, humor, determination, and countless reminders that a diagnosis is only one part of a much bigger life.
Guided by the curious Prof. Hong, young readers will explore the science behind DMD, discover the important role of dystrophin, and learn how the condition affects muscles and movement. More importantly, they will meet a family that continues to pursue education, sports, music, and meaningful goals together.
This book was created to help children ask questions, understand disability, celebrate inclusion, and see the person beyond the diagnosis. It also includes child-friendly vocabulary and extension activities for families and classrooms.
Every rare journey begins with curiosity. Every discovery begins with a question.
Purchases from The Rare Journey Series help support children and families in the rare disease community.
Available now in paperback and Kindle: https://www.amazon.com/dp/B0HLPT1DZC/
#RareJourney #duchennemusculardystrophy #DMD #RareDisease #disabilityinclusion #childrensbooks #STEMEducation #teachrare
Join me, Prof. Hong, on another unforgettable adventure in the Rare Journey series as we explore Duchenne muscular dystrophy, also known as DMD. Our...
www.amazon.com
