Tyler’s Dream

Bio:

Jennifer’s journey began in 2015, just two days after her only child Tyler started third grade. Within weeks he had undergone multiple MRIs and was found to have Syringomyelia. Jennifer & Tyler were immediately thrown into a world of specialists, imaging, unanswered questions, and medical uncertainty.

One of the first neurosurgeons they saw told them Tyler did not have a syrinx, despite it clearly being visible on his MRI. That moment changed everything for Jennifer. She realized they would have to fight to be heard every step of the way.

Tyler lived with severe pain in his neck, back, hands, legs, and feet yet they were repeatedly told that Syringomyelia does not cause pain. Over the next several years, he underwent extensive testing, countless appointments, and evaluations by multiple specialists across the country searching for answers.

Eventually, Tyler was diagnosed with Ehlers-Danlos Syndrome, and later imaging revealed dorsal arachnoid webbing contributing to his Syringomyelia. He underwent major neurosurgery in 2019, and additional surgery was planned for occult tethered cord.

But the physical pain became too much and he could not wait to see neurosurgeon number twelve.

Jennifer lost Tyler on February 28, 2020.

What many people do not understand is that rare conditions like Syringomyelia and the underdiagnosis of Ehlers-Danlos Syndrome affect far more than the body. Patients often face years of dismissal, delayed diagnoses, lack of treatment pathways, financial strain, and overwhelming emotional exhaustion.

Jennifer also lives with the same genetic condition, including Syringomyelia. She understands firsthand the pain, complications, and challenges these conditions can bring.

After losing Tyler, she created Tyler’s Dream, a nonprofit supporting children and teens diagnosed with Ehlers-Danlos Syndrome and Syringomyelia. Through care packages, birthday cards, resources, emotional support, and advocacy, she wants families to know they are not alone.

jennifer’s Statement:

“I want my pain to help bring the change we need. I am sharing our story because awareness matters. Earlier diagnosis matters. Research matters. Being believed matters. Better imaging matters. Thank you James and Megan for making sure this community is HEARD.”

IAHC Call to action & support statement:

The I AM HEARD Coalition is honored to stand alongside Jennifer and Tyler's Dream — not just as partners, but as a shining example of what the nonprofit space should look like when it is built on integrity, compassion, and the belief that every voice deserves to be heard.

Tyler deserved better. Not just from the medical system — but from the nonprofit space that was supposed to fight for him. And that truth is exactly why this partnership matters.

To the community and to anyone considering where to direct their support: do your research. Ask hard questions. Find out whether an organization is actually reaching patients, or whether it is using the desperation of a chronic illness community to fund inflated executive salaries and low-value programs. Look at the impact. Demand transparency. Because when organizations fail to put resources back into the community they claim to serve, the consequences are not just financial — they are human. Lives are at stake.

We have heard other organizations describe the nonprofit landscape as a pie — the more organizations that exist, the more "slices" are taken. We reject that framing entirely. The revenue a nonprofit raises is not a pie to be divided. It is access to resources that a community has entrusted us to distribute wisely and directly. Every dollar hoarded in overhead is a dollar that did not reach a patient who needed it.

What Tyler's Dream and the I AM HEARD Coalition represent is what collaboration between nonprofits serving the same community should look like. Not competition. Not scarcity thinking. A shared mission, a shared standard, and a shared commitment to making sure the community we serve actually feels it.

We are proud to build this friendship with Jennifer and Tyler's Dream — and we are committed to making sure Tyler's legacy, and every voice in this community, is honored through action.

Please be sure to check out Tyler’s Dream and if you are able, support this amazing organization by donating, purchasing wishlist items, or volunteering as a member.