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Charity & advocacy

A race against time

With new life changing treatments for Spinal Muscular Atrophy Type 2 we could be forgiven in thinking the role of advocacy for this community can take a break but  treatments are only successful if you have a diagnosis and in the case of SMA it is a race against time. For children whose symptoms lie dormant for the first few months of life newborn screening is crucial to allow them to access the treatments they need.

In her own words Lindsey Eubanks beautifully explains how family history prepared her for life as a high ranking rare disease ninja on a mission for newborn screening.

We were waiting in the waiting room of the specialty clinic when I noticed the slow, dull ticking of every clock around me.  This is the sound of a race against time; a sound all too familiar for parents in the middle of a gruelling diagnostic process, parents trying desperately to figure out what’s wrong (or right) with their children

Spinal Muscular Atrophy type 2 was making its grand entrance into the body of my son, laying dormant the first six months of his life and fully seizing his motor neurons by the time he was almost a year old.  With each passing second, my little boy slowly ceased his usual movements.  

There are few injustices to be exacted in the world. Some of us break completely upon the news of hearing a neuromuscular disorder. Personally, I think it turned me into a high-ranking ninja. My mother’s side is riddled with genetic disparities, ranging from Huntington’s disease, two cases of Spinal Muscular Atrophy type 2, Downs Syndrome, and several forms of high-functioning autism. My existence was centered around “special” people. And while most wouldn’t consider this advantageous in any way, it became rather beneficial in the process of finding a clear cut diagnosis for Lucas Eubanks. 

“This was not what the first year of life was
​meant to look like

There are few injustices to be exacted in the world. Some of us break completely upon the news of hearing a neuromuscular disorder. Personally, I think it turned me into a high-ranking ninja. My mother’s side is riddled with genetic disparities, ranging from Huntington’s disease, two cases of Spinal Muscular Atrophy type 2, Downs Syndrome, and several forms of high-functioning autism. My existence was centered around “special” people. And while most wouldn’t consider this advantageous in any way, it became rather beneficial in the process of finding a clear cut diagnosis for Lucas Eubanks. 

​I began examining the minutiae of his diagnostic process that didn’t go quite “right”. That reflective phase—that phase made me come to terms with the flawed internal communication within the hospital which eventually evolved into the epicentre of delay in my son’s diagnosis. Upon further investigation, we lost a great deal of time when we didn’t have to.

We notified the first neurologist that I had a relative with the condition. Even in providing this information, we were not sent to a geneticist. We waited months for several unnecessary tests to rule out other disorders. My saving grace was crowdsourcing data from an SMA Support Group on Facebook where parents notified me that all my son needed to rule out the condition was a simple blood test. We demanded the test. The genetics department forgot to call us, which ended up being more lost time. 

“My son was born three weeks after the only government-approved treatment for Spinal Muscular Atrophy was made publicly available.  It’s important to note that had we known about his condition at birth, he could’ve been treated immediately

Children who receive intrathecal injections from birth do not suffer the same visible, physical decline that my son did.  I actively sought out the opportunity for treatment. Upon receiving loading doses, Lucas began to show significant gains in fine and gross motor skills. After six months of treatment, his ability to sit and roll slowly returned. At nine months post-treatment, he occasionally began bearing weight on his legs.  After one year, he began to scoot about.  The physical gains were significant enough that I constructed a video timeline of his decline prior to treatment and displayed his improvement post-treatment. 

With all of this chaos without answers, some switch flipped in my head, something happened to me as a whole person on a cellular level.  I began making a spreadsheet of correspondence with nurses and doctors, I began organising video recordings and footage of my son’s journey. It became a pertinent tool in swaying public health officials to add SMA to newborn screening in Mississippi. I filed a formal grievance with the hospital, I called the department of health on a whim to ask if they’d considered adding my son’s condition to newborn screenings. I contacted attorneys to see if I needed to draft a Senate bill and get sponsors to have SMA added to the test panel. I got in touch with the genetic advisory committee in Mississippi and developed a rapport with the woman filing the paperwork to add the condition to the newborn screening panel.

After six months of correspondence on a local level with the department of health, I found myself on the steps of the nation’s capital in Washington D.C. for Rare Disease Week, ready to ask senators and representatives to call our secretary of state to make it mandatory to test for SMA in all newborns. Much to my shock and surprise, I was heard loud and clear. The condition was added to the screening panel and implemented in my state in October 2019. 

The condition was added to the screening panel and implemented in my state in October 2019. From that point forward, any child detected with the condition would then have the option for treatment from birth

I was invited to speak at the department of health’s newborn screening training to illustrate the elusive nature of the disease when it isn’t present at birth. I accidentally became this spokesperson for missing the boat on a diagnosis and dodging a bullet by accessing treatment for a rare disease. I continue my push for early intervention so that no other mother or father has to witness what we did, their child losing motor neurons, and ultimately, time. 

Grief is a strange monster who leads one to a darker place, that when channelled properly, provides a winding pathway to change-making. Adaptation demands critical survey of variables we can tangibly affect. Those variables we’re able to change don’t simply fall in our laps; justice is something we can seek out and eventually create for ourselves. In a much bigger way, we can use our narratives to benefit the lives of others


Click on the button below to be direct to the SMA Support System facebook group which Lindsey found to be the most helpful for resources at the beginning of her journey

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