Adam

Adam's Story

Adam is 14 years old and he is the most social, friendliest, fun-loving teen. He loves spending time with his family and friends, he loves to banter, and he makes friends everywhere he goes! In 2017, just 4 years old at the time, Adam was diagnosed with Hunter syndrome. We were told that this rare disease has no cure, and that most boys with this condition do not survive past their teens. His father and I were beyond devastated, we kept thinking to ourselves “we only have 10 more years with him.” Watching your child grow up, you tend to say and agree that time is a thief, and in our case, it couldn’t be further from the truth. Hunter syndrome does not care; it rears its ugly face and starts to take your child away. The only positive outcome to this diagnosis was that Adam was able to access a weekly enzyme replacement treatment, but it is still not a cure. 

Regardless, we were determined to give Adam the most “normal,” happy life possible, we didn’t want to dwell on the negative. Fast forward to 2021- mid pandemic, and with the way the world was changing before our eyes, we always knew that we would do anything to help him. We started looking into clinical trials for a potential new treatment that can also treat the brain.  I remember one specific night, where I was overwhelmed with the uncertainty in the world around us, I was scared that we weren’t doing enough for him, and scared that if we didn’t act now, that we would watch him regress, deteriorate, and lose him to this disease.  I threw myself into the only thing I knew, and that was prayer.  I remember talking to God one night and telling Him: “If this treatment is meant for Adam, then please, get us there.  We will do all the dirty work, just get us there.”  And before we knew it, Adam was accepted into the clinical trial that summer. Within a blink of an eye, we uprooted our lives.  Everything that happened after, was all in God’s perfect timing, He got us here, we took that leap of faith, and we were ready to do all the dirty work- because clinical trial life is not easy.

After being in the clinical trial for 5 years, we witnessed all the positive changes in Adam- from his speech to his hearing, mobility, and cognitive understanding. We were also fortunate enough to witness the FDA finally approving this treatment, and now, because of boys like Adam, our Hunter syndrome community now has treatment options all thanks to the sacrifices made by these boys and their families.