No child should have to face this in fear, or alone.
In partnership with Tyler’s DreamChildren are not immune to syringomyelia and its associated conditions. In fact, children often struggle the most with rare disease, not only physically but emotionally as well.
The I AM HEARD Coalition is here to ensure that no child has to live in fear of a life without help. We must fight for our youth.
Kids carry this differently.
A diagnosis at eight is not the same as a diagnosis at forty.
A child with a syrinx is still growing, still in school, and still figuring out who they are. Pain, fatigue, headaches, and scans can quietly take over childhood, and parents are often left to coordinate care across several specialists while trying to keep life normal.
We believe families deserve plain answers, practical help, and people who pick up the phone. That is what this page, and this partnership, are for.
A few facts worth knowing.
Pediatric syringomyelia is most often tied to Chiari malformation, and the research gives parents real reasons for both vigilance and hope.
Syrinx is more common in kids with Chiari I
In a six-center series, 65% of pediatric Chiari I patients had syringomyelia at presentation, compared with 37% of adults. Scoliosis was also far more common in children.
Multicenter comparison, J Neurosurg Pediatr 2024. Read the study
A childhood peak
Chiari I presents in two age waves: the first peaks in children around eight to nine years old, with a second peak in the early forties. Knowing the pattern helps families push for the right imaging sooner.
Multicenter comparison, J Neurosurg Pediatr 2024. Read the study
Many idiopathic syrinxes stay stable
Across the largest pediatric series of idiopathic syringomyelia, 91–95% of children remained stable or improved with monitoring alone over up to seven years. Watchful, regular follow-up is a legitimate plan.
Systematic scoping review, 2026; Sheffield Children’s series, 2013. Review · Series
Please note: these figures describe groups of patients, not your child. Every case is different. Use them to ask better questions, not to replace your child’s care team.
Honored to partner with Tyler’s Dream.
Collaboration is one of the most powerful ways to achieve a mission.
As a nonprofit, our mission is about the community of individuals we serve, and with any well-intentioned organization, collaboration is one of the most powerful ways of achieving mission goals. That is why we are honored to partner with Tyler’s Dream, a nonprofit dedicated to supporting children and teens, ages 0 through 19, diagnosed with Ehlers-Danlos Syndrome or syringomyelia.
Tyler’s Dream exists to brighten a child’s day. Families register, add their child, share their story, and the community responds with encouragement and small gifts that remind kids they are seen.
- Welcome packages for newly diagnosed children
- “Happy Mail” and birthday cards with words of encouragement
- Wishlist gifts sent with a personal note
- Virtual meetups and peer connection with other kids who get it
Two organizations. Two direct lines of help.
Children and their families now have two direct resource aid organizations. Between the I AM HEARD Coalition and Tyler’s Dream, you can count on several methods of help to achieve the best quality of life possible. We encourage you to reach out to both.
Resources, education, and direct aid
Everything we offer is open to families with children. Start anywhere.
- Care packages tailored to what a child and family actually need
- Grant program for direct patient aid
- Appointment prep guides so parents walk in ready
- Hierarchy of needs: a framework for the whole person
- Medical glossary in plain language
Joy, encouragement, and community for kids
Built specifically for children and teens, ages 0–19, with EDS or syringomyelia.
- Welcome packages when a diagnosis is new
- Happy Mail, birthday cards, and wishlist gifts
- Virtual meetups and peer connections
- tylersdream.org · Instagram · Facebook
Join our family.
Real people. Real replies.
Both of our organizations pride ourselves on creating meaningful connections that involve regular, direct communication with the founders and team, so no child or parent ever feels alone in this fight. If you are a parent, a teen, a teacher, or a clinician who knows a child who needs us, email Info@IAMHEARDCoalition.org and tell us what is going on.
You will hear back from a person, not a form letter. We will listen first, then help you find the next right step, whether that is a resource of ours, an introduction to Tyler’s Dream, or help finding a provider who listens.
Want to help protect the future?
Donations fund care packages and direct aid for families, including children. Volunteers help us build local chapters and get resources into schools and clinics. Every bit of it reaches a kid who needs to be heard.
Disclaimer
This page is for education and community support. It is not medical advice, and nothing here replaces evaluation by your child’s physician or care team. Statistics are drawn from published research on groups of patients and may not reflect any individual child. Tyler’s Dream is an independent nonprofit; the I AM HEARD Coalition does not control its programs or eligibility.
Questions
Email us at Info@IAMHEARDCoalition.org. We can’t give medical advice, but we can help you find resources, providers, and people who understand.
Sources
- Tyler’s Dream, Inc. Help Brighten a Child’s Day. tylersdream.org
- Chubb Law Accident & Injury Attorneys. Tyler’s Dream named monthly giveaway recipient (programs and ages served). National Law Review, 2026. natlawreview.com
- Multicenter comparison of Chiari malformation type I presentation in children versus adults. J Neurosurg Pediatr. 2024. PMC11369763
- Idiopathic syringomyelia: a systematic scoping review. 2026. PMC13513870
- Management of isolated syringomyelia in the paediatric population. Sheffield Children’s Hospital, 2013. PubMed 23472665