Support Ethen's Journey with Ehlers-Danlos Syndrome

A little over two decades ago, my life was transformed by the birth of my firstborn child, and I began the journey of fatherhood that so many reading this will know is as full of delight as it is of unexpected challenges. This year, a few of those challenges have emerged all at once, and I am stepping far outside of my comfort zone to ask for help from those who know, love, and are inspired by my son, Ethen.

After many years of mysterious pain and fatigue that made little sense for a teenager, my son was finally diagnosed with a rare genetic disorder called Ehlers-Danlos Syndrome (EDS). For him, this means a lifetime of joint hypermobility and instability, along with chronic pain and debilitating headaches. As anyone who has navigated a long diagnostic processes can attest, a diagnosis often comes with two conflicting feelings. The first is a feeling of relief that, after years of misdiagnosis and doctors dismissing symptoms, you finally have an answer! The second, though, is a complicated blend of fear and overwhelm, as you navigate treatment options, medications, appointments, and adjust to your "new normal." And for an emerging young adult like my kid, just trying to figure out his way in an already complicated world, the overwhelm kept growing and growing. A few weeks ago, I got one of the phone calls that makes every parent's heart sink, "Dad, I'm on my way to the hospital. I just can't take it anymore."

After evaluation at the ER, Ethen was taken by ambulance to Malvern Behavioral Health in Philadelphia, where he was admitted and remained for two-and-a-half weeks. There, he received further evaluation and testing and, at last, another diagnosis: CPTSD, stemming from a long mental health struggle in childhood and adolescence. We are still navigating the waves of relief for this diagnosis, but as he has now been discharged, we're navigating a new wave of fear and overwhelm. And this time, a lot of the overwhelm comes down to the financial reality in front of us.

That's where—we hope—you can come in and offer the gift of your support for Ethen as he continues to fight for his flourishing in this new season of life.

Most immediately, Ethen is now facing:

More long-term, Ethen is needing:

We are working on applying for disability, but we've been cautioned that the process can take years. For now, anything you can do to help us would make an impact beyond our wildest imagination. Thank you so much for all of your care and support. This community means the world to us.