Aug
05

For Ollie.

Since last week, I’ve had a plan for today. On Wednesday, August 5th, I was going to post about a little boy named Ollie, in honor of his first birthday.
And then two days ago, at 5:30 in the morning, Ollie died.

It seems exceptionally cruel to cause parents to lose their child and then, two days later, be visited by what would have been his first birthday. But then, Spinal Muscular Atrophy is an exceptionally cruel disease.

I first learned about Ollie right around the time of his diagnosis. Amanda, a close friend of Ollie’s parents, has been one of my most constant and encouraging readers, and has become a friend, despite her continuing refusal to move here from far-away Raleigh.

Ollie was about two months old when Neil and Bekka, his father and mother, began to notice that he didn’t move his legs much, and wasn’t trying to lift his head or roll over. He was diagnosed with Type I Spinal Muscular Atrophy, which is nearly always fatal by age two. Most babies—sadly, this group would come to include Ollie—do not make it to their first birthdays.

Just imagine what this must have been like. Neil and Bekka endured YEARS of loss and infertility before finally, finally giving birth to their son, and then after two months suffused with a feeling of peace and arrival, discovered that they would spend the next year watching their baby die.

Spinal Muscular Atrophy is the number one genetic killer of children under two, and the number two cause of infant mortality worldwide. At least 1 in 40 people, and possibly more, are carriers of the abnormal gene that causes SMA. There is a genetic screening test available, but while prospective parents are often screened to see whether they are carriers for other genetic conditions, like Cystic Fibrosis, the screening for SMA is rarely offered.

SMA causes deficiency of a protein called Survival Motor Neuron Protein. Without this protein, nerve cells may atrophy, shrink, and eventually die, resulting in muscle degeneration. In short, Ollie did not have the muscle to lift his head, move his legs, swallow, cough, or sneeze. He was eventually fed through a G-tube, and managing his secretions due to his inability to swallow became a full time job. In time, Ollie’s muscles deteriorated to the point that he was unable to breathe. Cause of death for babies with SMA is usually respiratory failure. Pneumonia due to secretions is common. Taking a breath, for Ollie, was work. Every breath—WORK.
I happen to know firsthand what it is like to watch your child fight for each inhale. It is a terrible thing.

By all accounts, Ollie was a remarkably happy baby despite what must have been a daunting daily struggle, and every picture I have seen of him bears this out. He always looks vaguely mischievous, like he is suppressing a giggle.

Ollie
Ollie

I’m not telling you all of this to ruin your Wednesday. I’m telling you because one of the tragedies of death is the snuffing out of a whole personality, and the world spinning on as if that personality never existed. And also because among more than 600 neurological disorders, SMA has been singled out by the National Institutes of Health as the disease closest to treatment. They are SO close to a cure, which seems both hope-inspiring and a little cruel.

Many diseases feel unbeatable. I’ve donated to research for a variety of conditions, and if I am honest, I’ll admit that it is often exhausting to know that while treatments have improved, a cure is a long, long way off. This isn’t the case with SMA. We have the opportunity to make a dramatic difference, and a fund in Ollie’s memory has been set up through Families of SMA. The proceeds go toward critical research and the education and support of families affected by this disease. At the very least, I think we can all contact our representatives, and ask them to endorse the SMA Treatment Acceleration Act.

Lastly, as you go about your Wednesday—sitting in meetings, soothing a maddeningly fractious baby, wondering what you might have for dinner—please keep Ollie and his parents in your thoughts, and leave a comment here to let them know that you’re doing so. Remembering is a small thing, or at least it can seem that way. But it means so much to the people left behind.

By Alexa | Posted in Ceci N'est Pas Une Ecrivaine |