Hi Everyone,

I really don’t know how else to start this besides to state that we are devastated beyond belief.

Two weeks ago, our entire world flipped upside down. Our son, Brody, was diagnosed with an extremely rare brain disease affecting less than 300 people worldwide.

After years of doctors appointments, therapists, neurologists, and geneticists, he has officially been diagnosed with Creatine Transporter Deficiency (CTD) from a De Novo gene mutation. Aka, no creatine is reaching his brain. This disease causes developmental delays, intellectual disability, limited/absent speech, seizures, and motor impairments.

Without a cure or treatment, Brody will likely need care for the rest of his life and assistance with basic life activities. The more time that passes, the less creatine reaches his brain. There is currently no cure, but there IS hope on the horizon… it’s just going to cost a bit of money to get the research to clinical trials.

How does something like this even happen? Brody is the sweetest boy on the planet and I would give anything to wake up from this nightmare.

I don’t know what else to say. I am numb, sick, and have no idea how I’m going to move forward in life.

We, us and the CTD community, are extremely close to a cure, and the only thing standing in the way is funding. We will dedicate the rest of our time on this planet to finalizing this cure and we need your help.

Please repost, donate, spread the word, anything and everything helps. We need you. Brody needs you. And so do the thousands of others living with CTD that simply have not been diagnosed.

Funds will go towards the Association for Creatine Deficiencies, researchers directly, supplements, international travel and accommodations for clinical trials, intensive therapies and more.

For more information please visit creatineinfo.org

Thank you,

Sydney DeVault