A Dedication to Tyler

By Jon Jon

I wrote this song and dedicate it to my dear friend, Tyler.

Tyler is an extraordinary young man, born in May 2010, and diagnosed with L1 Syndrome—a rare genetic disorder also known as X-linked hydrocephalus. This condition affects approximately 1 in 30,000 births, primarily in males. It is characterized by hydrocephalus (accumulation of fluid in the brain), spasticity in the lower limbs, adducted thumbs, aphasia (difficulty speaking), seizures, and agenesis of the corpus callosum (the absence or underdevelopment of the structure that connects the two hemispheres of the brain).

Hydrocephalus impacts people across all age groups—from infants to the elderly. For many families, the emotional and financial burdens that accompany this condition are overwhelming. I invite you to join me in raising awareness and offering support to those affected by L1 Syndrome and hydrocephalus.

Although Tyler faces many challenges in life, he never seems to let that get in the way. Some of his favorite things are books, his tablet, and of course, his Mom. He likes to watch Cops when he can, and he loves going to the park. His mother has even taken him to the skateboard park and pushed him in his wheelchair on the cool skate ramps.

Tyler,

Knowing you has forever changed my life.

You are always in my heart and on my mind.

I love you dearly, my friend.

Join the Fight Against Hydrocephalus

More than one million Americans live with hydrocephalus, which brings a life of brain surgeries, migraines, and many complications. Let's change the further of hydrocephalus by supporting the Hydrocephalus Association!