Our Journey With Jared:
Jared Patrick Ashley

Our precious Jared was seven months old when he was diagnosed on October 20, 1997 with type II Gaucher disease. The feelings of helplessness, hopelessness, confusion and devastation broke our hearts beyond belief. At that time Jared’s symptoms seemed minimal – occasional choking (identified as reflux), enlarged spleen and liver and ocular motor apraxia. After much research and many phone calls we were led to believe Jared was not a typical type II baby. He was crawling, pulling up and cruising, babbling, and he seemed to be developing normally. This led us to the decision to start Enzyme Replacement Therapy. For the first time we had hope, maybe Jared would beat this disease; maybe he was going to be healed. We were grateful for the treatment and very hopeful. Jared continued to do well on treatment, yet his eyes began to cross, his choking or laryngeal spasms (labeled breath-holding spells) became frequent, and his upper airway congestion became chronic. Every cold became life threatening. We went through croup, viruses, and pneumonia for months, each sickness leaving us in despair. Yet Jared was a brave and tough little boy, pulling through each episode and continuing to amaze us with his happiness. Jared continued to point, grunt, laugh, and smile every day. We loved Jared to the fullest and truly enjoyed him each day of his life.

In April 1998, his choking spells became more regular, occurring mainly when he slept, coughing himself awake and then struggling to breath. The countless sleepless nights left us exhausted. For weeks my husband held Jared all night long so he could sleep comfortably. For months Jared slept in our bed; we did everything in our power to keep him happy. Watching him suffer this way was extremely painful. We felt so helpless. We were filled with fear, and we learned what a horrible disease this was.

We lived with Jared’s disease for one year. He lost the battle on October 15, 1998 at 19 months of age. To focus on the horrible disease and classic symptoms from which he suffered would be a disservice to Jared.

Jared was a brave little boy. He was such a blessing in our lives. For a little boy who couldn’t walk or talk, he taught us more than we ever would have imagined. Everyone who met Jared knows his smile would steal your heart. The overabundance of thoughts, prayers and meals sent our way sustained us throughout our brokeness and sorrow. I would encourage every parent facing this or a similar situation to let your family, friends and the community reach out to you and love your child. Allow them the privilege of knowing your precious angel which you have been blessed to care for on earth.

Suzy and Robbie Ashley
Merritt Island, Florida