I returned from being out of town for work for most of the week, tired from traveling across the country, when my cell phone rang. I answered to hear the high-pitched, somewhat squeaky, but excited voice of Hannah Sames say, “I’m getting injected!” Those three simple words are ones those of us who love Hannah and her family and have actively been supporting Hannah’s Hope for years have been waiting to hear. Hannah has a disease called Giant Axonal Neuropathy, a progressive paralyzing disease in children. GAN is an orphan disease, which means that until HHF came along, no one cared much about it. It’s like Lou Gehrig’s Disease, but for children; an insidious disease that steals the ability to walk and then move and then talk and finally the ability to breath.
Although filled with risks, the gene replacement therapy (the “injection”) is the only treatment available that provides any hope to slow or stop the progression of the disease. This trial is the first in history to deliver gene therapy through the spinal fluid to test the potential to achieve broad treatment of the spinal cord and brain. If this works, it could have far-reaching and positive affect upon the treatment course for other diseases.
Hannah will be the fifth child injected, fulfilling the premise upon which Hannah’s Hope Fund was founded – to provide hope to any child and his/her family who gets this diagnosis.
So, Hannah’s call, telling us that she is going to be the next child to be injected as a participant in the GAN gene therapy clinical trial, was a joyous one.
Saturday’s call started the day off right; it was impossible not to smile.
Later that day, the smile got bigger. More than ten years ago, I worked on a case involving a little girl who was paralyzed in an automobile accident. She was seven years old at the time of the accident and it was many years before her case was resolved. The spinal injury was so severe that she was left ventilator dependent and can only move her eyes and mouth.
In the years since the accident, she has undergone multiple medical procedures, surgeries, extended hospital stays, tens of thousands of hours of physical therapy and attempts to wean her off the ventilator. Her parents and sister (truly a remarkable family by every measure) have provided comfort and care and surrounded her with love, laughter and prayer. In those same years, she graduated from high school and college with honors and pursued her love of writing by penning songs, blogs, stories, poems and has maintained her dream of becoming a big player in the Hollywood movie scene.
As Ashley has pushed her parents to allow her to gain her independence into adulthood, and in addition to the other work she has been doing, she has spent time assisting The Miami Project to Cure Paralysis and The Buoniconti Fund to Cure Paralysis (www.themiamiproject.com) with their fundraising efforts to fund studies and clinical trials for spinal cord and brain injuries – offering hope to those who have suffered one of these traumatic injuries. Hope to breath independently, hope to walk independently and hope to live independently.
The reason Saturday night was so important? Ashley is getting married! And, it was again impossible not to smile. Broadly, from ear to ear with joy. For her, for her family, for her fiancé and for the power of love.
Hope and Love. Sometimes that is all we have to cling to. That was Saturday’s message. Got it. Loud and clear.