Getting your Trinity Audio player ready...

By Marie Harrison

For the Clemmons Courier

As my daughter fights to battle the rare disease Friedreich’s Ataxia, my husband and I do our part as her “research team.” 

While my daughter struggles to walk as a result of the damage being done to her nerves and muscles from inside her body, my husband and I scour the internet for the latest research and clinical trials. What’s on the horizon? What’s showing promise? What new drugs and therapies are being tested? And with each click of the internet, we try to remain ever hopeful, always praying for a cure. And so, when I came across a new drug last week that had already completed adult trials and showed great promise, I was intrigued. Five years of adult testing thus far and an abundance of results showing that this drug was able to stimulate production of the one protein every cell in our body needs, and the very protein my daughter’s disease blocks. The adult results were so good that the drug was cleared to begin testing on pediatric patients, and we emailed the study doctors as quickly as we possibly could to find out more. 

Through emails back and forth with the study doctors, my daughter seemed to fit the parameters they were looking to fill. She checked all the boxes she needed to check and most importantly, she was ready and willing to participate in a study that would involve a week’s worth of daily injections and monitoring. And while we continue to jump through the hoops of the preliminary testing, it is looking more and more each day like my daughter will be able to participate in the study. And the best part — upon completion of the whole study at the end of March, she will be able to take the drug while it waits 1-2 years for formal FDA approval. To say we are hopeful is an understatement. The chance to get her body what it needs and keep it from breaking down further would be an answer to a prayer prayed a thousand times a day. The chance to receive the drug early, years before it is widely available, would be huge. And so, with each new development, each new meeting with the study team, each new preliminary test run, we wait with bated breath, hopeful.  

And out of sheer coincidence, my daughter was recently assigned a paper in her English class, studying the works of the poet, Emily Dickinson, and more specifically, examining her poem “Hope is the Thing with Feathers,” a poem she knew well. During second grade, my daughter’s class had memorized this exact poem to recite at the schoolwide poetry recital, and now seven years later, she could still recite each word.

As my daughter recited the poem for me, “Hope is the thing with feathers, that perches in the soul, and sings the tune without the words, and never stops at all,” I couldn’t help but think about how fitting this poem is for our current season of life. Hope. Perching in our souls like birds on a limb, singing out in the darkness and the trials that come with FA, but never stopping at all. If I could pick one word to describe our journey this year, this far, it would be hope. Hope for a cure, hope for healing, hope for the things to come.

And yet, here on Earth, hope in new drugs, hope for treatment, hope for healing, all come with held breath. It is all too easy to realize that this treatment may not work for my daughter, it’s not hard to imagine a scenario where my daughter doesn’t get selected for the trial, and as easy as it is to hope, it is just as easy to think of that hope being dashed. Yet, there is something we can hope for that will not be taken away, a hope that is eternal and assured, a hope not bound by the trials and tribulations of this world — the hope for eternity with Jesus.

My favorite Bible verse comes from the book of John. As Jesus is telling His disciples not to let their hearts be troubled, knowing His crucifixion and death are imminent, He tells the disciples, “My Father’s house has many rooms, if that were not so, would I have told you that I am going to prepare a place for you?  And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.” (John 14:2-3)  Jesus knew the disciples were getting ready to face the trial of His death, He knew they needed something to hold on to and hope for amidst the pain and suffering, and so, Jesus gave them hope.  But not hope like we have here on Earth, hope that comes with assurance. Jesus says He is going to prepare a place for them and that He will come back to get them. Not just hope for heaven, assurance. And this hope and assurance isn’t just extended to Jesus’ disciples, He offers this gift to all who believe and trust in Him. What a gift that even when the days are long here on Earth, when hopes come and go, when things don’t always work out, we have something sure to hold onto, Jesus. And the kind of hope Jesus offers is not like a thing with feathers, but rather, a hope for eternity, a hope for heaven, a hope and assurance of good things to come.