We welcomed Hunter into the world in 2005. We were full of joy, hope, and first-time parents worry. We thought of how he would be as a baby, how he would grow up, and hopefully make a life for himself and a difference in the world.
At 6 months we learned some awful news—Hunter was diagnosed with a seizure disorder (epilepsy). We were told he would likely not live to age 13.
At the time, this diagnosis felt like a death sentence, like all the hopes and dreams we had for him had ended. Every day, even now, we hurt from this news. Hunter cannot walk or talk or sit up or do anything on his own. He verbalizes but without words. He is tube-fed.
But Hunter has taught us to be thankful for what we have. He has given lessons to his brothers on humility, compassion, caring, patience, and never taking things for granted. One day around age 4 Hunter got to teach another lesson. We were wheeling Hunter around Walmart in a regular stroller. A lady stopped us to say we should let him get up and walk and not push him in the stroller. Hunter taught her never to assume you know someone’s situation after we explained that Hunter could not walk.
At diagnosis time we started him on single and sometimes multiple FDA approved medicines simultaneously. The medicines caused numerous severe side effects. At some point, after starting medications we saw a movement disorder begin. He would flail his arms and legs without purpose and move his head all around.
The movement disorder continues today and is the main reason we can’t use some of the adaptive equipment that is normally paid for by insurance. The entry-level bath chair that only has a seat belt will not hold Mr. Mover. The movement disorder is almost harder to deal with than the seizures. He is typically motionless and calm only when he is asleep or sleepy, whereas the seizures come and go.
Hunter’s story would be incomplete without sharing another lesson he has taught.
Around 2012 we had enough with the pharmaceutical treatments. None of them worked. We weaned all medications in coordination with his doctor. He was still having seizures up to 27 minutes but was free from the medicine side effects.
In 2013, we learned of a little girl that saw seizure control from medical cannabis. We moved to Colorado to try this treatment and it worked to decrease his seizures to under 5 minutes. However, we couldn’t move home. We shared Hunter’s story in 2014 and 2015 with the Georgia General Assembly and news outlets. In 2015, with help from a state representative and numerous other families, Hunter helped pass House Bill 1 – Haleigh’s Hope Act, which brought our family home to Georgia and allows possession of medical cannabis oil. He taught Georgia legislators that medical cannabis can work.
As of today, Hunter is still having similar seizure control. We no longer worry that the school is going to call 911 for a seizure over 5 minutes as was happening regularly before cannabis oil.
Hunter is lucky to have 2 brothers and a mom and dad that love him. Age 13 we finally gave in to getting him nursing care. He has an amazing CNA that takes care of him and loves him and understands him. Life is not always easy for him, his brothers, or us. But life is way easier with the help of organizations like Specially Gifted. He has a lot to be thankful for and so do we.
Gift: Medieval Times tickets & a Rifton HTS
Given: June 2020
Location: Marietta, Georgia