For Ollie.

by Alexa on August 5, 2009

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.

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SarahB August 5, 2009 at 11:34 am

Oh, how sad! As many of my peers are beginning to have children, it hits close to home just how lucky a family is to have a healthy child. My thoughts go out to Ollie’s family…

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Susan August 5, 2009 at 11:40 am

I know that words are useless in this situation, but I am so very, very sorry.

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liza August 5, 2009 at 11:43 am

Thanks for sharing Ollie’s story. I’ll be thinking of him and his family today and for many days to come.

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JenniferB August 5, 2009 at 11:59 am

This is so sad — thank you for sharing Ollie’s story here and please let his parents and loved ones know that our thoughts are with them.

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momsy August 5, 2009 at 11:59 am

Heartbreaking. My thoughts will be with Ollie’s family.

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Sarah August 5, 2009 at 12:00 pm

What a beautiful boy. I am so very sorry for their loss, I will keep the family in my thoughts.

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JoAnn August 5, 2009 at 12:01 pm

I am in tears. I am so sorry.

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Katie August 5, 2009 at 12:11 pm

Oh, Neil and Bekka my heart goes out to you. Ollie was truly sparkly! I’m sorry I didn’t get to know him.

Alexa, I had a colleague who had two beautiful children with SMA. One is in college now. The other died at age 2. Her funeral remains the most devastating and heartbreaking thing I have ever witnessed but, as a result, I have been a donor to Families of SMA in the past. Good reminder to do so again.
My thoughts are with Ollie’s family and friends today.

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Stephanie August 5, 2009 at 12:20 pm

Thank you for your touching story. This beautiful child will never be forgotten. I have a friend whose daughter was recently diagnosed with SMA. I had no idea what they were going through, as they have chosen to be very brief in what they reveal to friends. Thank you for helping me understand a bit more.

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jen August 5, 2009 at 12:21 pm

I will be thinking of Ollie and his family today. My heart goes out to everyone who loved him.

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Maureen August 5, 2009 at 12:36 pm

What a beautiful boy. I’ll be keeping him and his parents in my thoughts for sure.

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Hannah August 5, 2009 at 12:38 pm

Bekka and Neil,

I don’t know you, but I want you to know on this day that I am thinking of you and your little boy. I’m just so, so sorry for your loss.

-Hannah

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Jenny August 5, 2009 at 12:40 pm

I’m too sad to comment much. he looked like a beautiful baby. So sorry.

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Melissa August 5, 2009 at 12:42 pm

I’m so sorry for your loss Neil and Bekka, it is difficult to even imagine what you must be going through.

Your son is beautiful and I’m so grateful to have heard his story.

You are in my thoughts and prayers.

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chasa August 5, 2009 at 12:46 pm

What a beautiful boy. His personality really shows in those photos. Neil and Bekka, I can’t fathom the magnitude of your loss, but I will keep you and your Ollie in my thoughts. Thank you (and Alexa) for sharing him with us.

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Nothing But Bonfires August 5, 2009 at 12:51 pm

Oh, Neil and Bekka, I am thinking of you. That doesn’t mean much coming from a random person sitting in a cube in San Francisco, I know, but still. I will keep Ollie in my thoughts all day.

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Dani August 5, 2009 at 12:53 pm

How tremendously sad.
Having had a NICU baby, I also understand the terror of watching your baby fight to breathe. I understand being given this gift and then being horrified to learn that it may be taken away. I’m overwhelmed by what it must feel like to actually lose your little one
Thank you for sharing Ollie’s story with us. I’ll be thinking about his family and I definitely know where my charitable money is going this year.

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Sue August 5, 2009 at 12:54 pm

What a beautiful little guy. Ollie and his family are in my thoughts. Thanks for sharing his story.

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Belle August 5, 2009 at 12:56 pm

I’m so very, very sorry. I cannot fathom the pain that Ollie’s family is going through. My son is named Oliver. I will say a special prayer for Ollie and his parents.

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Lawyerish August 5, 2009 at 12:58 pm

I’m looking at that incredibly sweet and joyful face and thinking how unjust it is that the world will not see him grow to adulthood.

My thoughts and prayers are absolutely Ollie’s family and everyone who loved this little guy.

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amanda August 5, 2009 at 1:01 pm

Thank you Alexa.

And thank you everyone who has promised to remember Ollie in your thoughts today and in the future. If we can do anything for Neil and Bekka it is so do our small parts to help keep it from happening in others.

Get tested. As Bekka says, “prevention is the only cure.”

Call your congressional and senatorial representatives. It takes about two minutes and will bring us so much closer to funding the research for finding a cure.

And, if you can, make a donation if your heart is so led.

We are all very grateful for your thoughts, prayers, and actions. It means so much.

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alison August 5, 2009 at 1:09 pm

What a little peanut! His life will continue to shine through all these good works, and hopefully hopefully a cure will soon be found.

Thanks for putting my life in perspective today… I’m dealing with a crank monster who’s teething and running a fever and now it’s really not that big of a deal. I will take a crank monster for all the days of our lives, it’s just a drop in the bucket.

Thoughts and prayers are with sweet Ollie’s family and friends.

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robyn August 5, 2009 at 1:13 pm

I cannot imagine the pain of losing a child. I will be thinking of Ollie and his family today and for a long time to come. I believe that the weight of grief can be lifted slightly when others help bear it, and am glad to be among those honoring the spirit of this beautiful little boy today. Much love and peace to his family.

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marta August 5, 2009 at 1:14 pm

Oh my god. So very sorry.

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Heather August 5, 2009 at 1:14 pm

What a beautiful child. To his parents I am so sorry for your loss. Your family is in my prayers.

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christy August 5, 2009 at 1:16 pm

I will think of him, tonight, and for a long time. I hope his family is okay…I can’t imagine their pain. I also know what it’s like to watch your child struggle for breath and then slip away…and my little boy was also named Oliver. Very different circumstances (my little guy was a 32 week preemie who just managed to get the crap end of the odds), but losing a child, losing that potential….that I get. I will remember Ollie, and I pray that a cure for this terrible disease is found soon. Peace to his family and friends.

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Ruth August 5, 2009 at 1:18 pm

How unspeakably awful. Neil and Bekka, I am thinking of you and your darling Ollie. What a gorgeous, delectable child he was.

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NGS August 5, 2009 at 1:24 pm

Poor little guy. It’s awful when the littlest ones are in pain because they can’t tell you where or how it hurts. I will keep Ollie and Neil and Bekka in my thoughts today.

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Me? A Mom? August 5, 2009 at 1:26 pm

They’re in my prayers.

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Michele August 5, 2009 at 1:27 pm

I don’t have anything eloquent to say – simply that I’m sorry for your loss.

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Rebecca August 5, 2009 at 1:29 pm

Ollie and his family will be in my thoughts and prayers. God bless them.

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Meghan August 5, 2009 at 1:38 pm

What a gorgeous baby. So sorry to hear of Ollie’s struggle and his parents’ loss. They are in my prayers.

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cindy w August 5, 2009 at 1:38 pm

This is heartbreaking. Neil, Bekka, and of course little Ollie are in my thoughts and prayers.

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Stephanie August 5, 2009 at 1:41 pm

I’ve seen SMA. It’s awful.

My thoughts are with Ollie’s family today.

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Foster August 5, 2009 at 1:46 pm

How very, very terrible. We are familiar w/ SMA in our community as one of our church families has a toddler boy w/ type 1. I think about him almost every day as he is the same age as my daughter. Thank God, he is doing alright for now, although he cannot sit up or eat. Thank you for posting that info about a possible cure!

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Gwynn August 5, 2009 at 1:47 pm

What a heart wrenching story. Ollie’s family will be in my thoughts and prayers.

And thank you so much for the link to donate (and the information to understand why this time hopefully I won’t just be sending my donation out into the universe with only a whisper of hope attached to it.)

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Liz August 5, 2009 at 1:57 pm

They are in my heart and prayers. I’m so, so sorry for their loss. A small donation has been made in Ollie’s name to the SMA fund you linked. I wish it could have been more.

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Mama Fuss August 5, 2009 at 2:00 pm

Oh my heart breaks for these parents. This family is in my thoughts and prayers.

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Erin August 5, 2009 at 2:00 pm

What a heartbreaking story. Ollie’s parents have my deepest condolences.

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Katherine August 5, 2009 at 2:02 pm

Thank you for sharing this… I must confess I had not heard of this condition. I am so sorry for his family’s loss… and judging from the pictures, this is the world’s loss too…

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Elizabeth August 5, 2009 at 2:05 pm

Very nice post. My nephew died at six weeks of a very rare genetic disease, it is so very, very hard. Ollie’s parents are in my prayers.

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heather... August 5, 2009 at 2:19 pm

No one should ever have to go through this. I am keeping his family in my thoughts.

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Melissa August 5, 2009 at 2:22 pm

my heart breaks a little every time I hear of parents losing a child. There, but for random good fortune, go I. I will hold my kids extra long tonight and think of some small comfort for Bekka and Neil.

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natalie August 5, 2009 at 2:29 pm

I will keep Ollie in my thoughts. No parent should lose a child.

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Sprite's Keeper August 5, 2009 at 2:30 pm

He’s so beautiful. My prayers are with Neil and Bekka on what should have been a happy occasion.

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Veronica August 5, 2009 at 2:34 pm

He is so beautiful. My heart is breaking for his parents.

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Betty M August 5, 2009 at 2:38 pm

I am so sorry for this family. Thank you for raising awareness of a disease which I at least had never heard of.

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Linda August 5, 2009 at 2:43 pm

I had never heard of the disease before reading your post. Thank you for opening my eyes.

What a beautiful baby.
Thoughts are with the family.

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Liam's Grandma August 5, 2009 at 2:57 pm

I will not forget Ollie. I will keep him and his parents and extended family in my daily prayers. This is crushing. Absolutely crushing. Tonight as I care for my 17 month old grandson while his mother works, I will thank God for him and I will not allow myself to stress about when his mother is going to come pick him up because I am tired.

Thank you for sharing this with us.

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Kris August 5, 2009 at 2:58 pm

I was lucky enough to work with MDA one summer and spend a day at MDA summer camp outside Phoenix. The kids, many of which had a less severe form of SMA, were amazing to be around. The kids were able to just be kids, which was a tremendous blessing to both them and their families.

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