Radio Interview

After Oliver was diagnosed with SMA, we quickly learned about being his advocate. And we are still advocates. Tomorrow I have a big opportunity as an advocate.

A radio station in Goldsboro, NC, has chosen Spinal Muscular Atrophy as its focus for its Broadcasting Hope campaign. Each Thursday they have educated their listeners about SMA. Last Thursday, they interviewed two fathers. (Mark's son, John, has Type III. Jeremy's son, Logan, has Type I.)

Tomorrow, they will interview me.

I'm excited and nervous, sure, but mostly...I'm honored. Honored that I can share my experience. Honored that I can share my Ollie.

Hopefully, lots of listeners will hear about SMA, about carrier rates and testing, about the Treatment Acceleration Act, and about contacting their Senators and Representative. Maybe some of them will actually call the Capitol Hill Switchboard and speak with an aide in the office of their Congressman or Congresswoman. Perhaps another Legislator will be swayed to co-sponsor the bill. And, if we're really lucky, the bill will become law.

I wish I could give you all access to listen to the interview tomorrow at 7AM (Eastern). But I haven't found any streaming audio or webcast of the radio's morning show. If I can find a way to upload the interview on the blog, I promise I will.

On Being Ollie's Daddy

Last week, on the night before Ollie's memorial, I couldn't sleep. I sat down with the laptop and began to put some thoughts on paper about what it was like being a dad and Ollie's dad in particular. Somehow, and I'm not really sure how, I made it through reading it at the service.

I had a lot of requests to post it and now almost a week later, I think I can do it. I hope you find it meaningful and that it sheds some light on our life with the little guy.

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Thoughts on being Ollie’s Daddy – August 7, 2009

Becoming a father is an interesting study in contrasts. My experience is that most men treat impending fatherhood with a mix of genuine excitement and a touch of wariness. I know I fell into that category. The wariness comes from two sources: 1) You instinctively know you are about to bring a being into your house that you think will compete with you for your wife’s affection (and is way WAY cuter) and 2) You are massively worried about screwing up.

The thing is – the first time you hold that little ball of warmth in your arms – every single worry and concern you might have had is gone – left right there in the birthing room. Now you are focused only on how you are going to provide the best life possible for this child and his beautiful mother.

The worries about making a mess of everything will come back – but you’ll find quickly that somehow, you manage to step right up and take care of each problem (with a little help from mommy and those wise and sage grandparents that have been there before).

So everything in your life is humming right along and all is good. Baby is growing by leaps and bounds and nursing like a champ and is clearly the cutest thing going in six counties. People are calling and emailing and dropping by “just to check in”. At the preschool, he’s two months old, only been there a week and already the teachers are wrapped around his tiny little pinky. Everyone he meets falls in love as he learns how to wield that big toothless grin like a battle axe of happiness.

Then a Mack truck drives through your living room and takes your life away. You noticed your child wasn’t physically developing quite like he should. You visit doctors and therapists, and then one day, while all alone, you figure out that your child is going to die. His beautiful mother is at work and you don’t want her to know yet, so you cry for 2 hours and sit rocking and hugging your little one railing against creation. Mommy comes home and you all 3 sit together holding each other and cry some more. A couple of weeks later, testing confirms your terrible suspicion and your life is upside down.

So now you have two choices: Give up and mope about, feeling awful (and you WILL do that at times – how can you not?) or get on with life and give your beautiful little son the absolute best and most comfortable life you and mommy can make for as long as you are going to have him.

So that’s what we did. That’s what our friends did. That’s what our family did and our nurses and doctors and EMTs.

Mommy and I lived for Oliver everyday. As time flew by, our little man was clearly getting weaker. Still, we awoke each day to see that smile and to see those eyes twinkle. Just one little Ollie grin was enough to make your day, a dozen grins were almost too much to bear, yet Ollie gave them constantly.

Life definitely became tough. It’s not right that you have to feed your child through a tube into his stomach and become proficient at medical techniques that no parent should even have heard of, much less ever expect to know – still that grin was there – a grin that extended from Ollie’s heart and shone from his entire face like a ray of happiness – that was enough to keep you going. Ollie was never angry and he was never sad. It’s like he knew that mommy and daddy needed help to get through this struggle. He couldn’t help physically, but if there was ever a person stronger in spirit, I’ve never met them in my time on this earth.

The world will be a little dimmer for all of us. We’ll have pictures, of course, but as powerful as they are, they cannot possibly do justice to the energy of a little boy that must have been an angel. We’ll make it though.

Being Ollie’s daddy was the best job in the world. And I miss him. I love you son.

A Week without Ollie

It's been a long week and we miss our little guy terribly, but both of us have reached a certain peace. It's an uneasy one to be sure, but every moment of the day isn't filled with terrible aching (just every other).

We want to thank everyone that has helped out so much over the last year and the last week. It's a journey we never could have made without friends along the way. Your pain was palpable as we said our goodbyes to our angel.

I think the hardest times to come are going to be during those still, calm hours when we are by ourselves.

It's so quiet.

It's hard to imagine that the Darth Vader whoosh-chhhhh of the oxygen concentrator would be a sound a person would miss - but if we were hearing it, it would mean Ollie was still with us. We are making progress, but it's not going to be easy.

I woke up this morning around 5:45am - around the same time we knew for sure he was gone on that awful day a week ago. Hearing an EMT say "there's no pulse and no sound from the heart" is not something any parent should ever have to experience, least of all about their one year old.

Over on Alexa's blog, she mentions the great tragedy in death of "the snuffing out of a whole personality, and the world spinning on as if that personality never existed".

You can feel that process already as we all head back to our homes and we prepare to head back to work. Ollie will always have a place in our hearts - a huge one full of light and sadness and joy and shade - but his presence was so ephemeral that the rest of the world barely knew he was here.

His mom and I are determined to make it known. We'll continue spreading Ollie's story and the story of the countless other SMA children taken by, or living with, this disease. Doctors and OB/Gyns and Genetic Counselors all need to know more and need to know it soon. Too many do not. Changing this means that Ollie's life might put a little hiccup in that spin.

We love you Oliver - you were one of a kind.

Ollie's Tale

Today is another day without our little Ollie-bear. We have candles burning all over the porch in his and all the other SMA Angels' honor.

So many asked for it, I've posted Ollie's slideshow at Picasa:

The music is by Renee and Jeremy and the album "It's a Big World". We highly recommend their stuff. It's so fresh and beautiful.

There are also new pictures from last month so feel free to explore those. I'm going to be burning DVDs that are playable in regular players after a little tweaking and I'll be able to make a copy for anyone that wants it.

This one has to be just right.

Honor Our SMA Angels

"Honor Our SMA Angels"

Join with families and SMA organizations around the country by lighting a candle at sunset on the second Saturday in August to remember and honor those who have lost their battle with SMA.

I hope that each of you will join us in lighting a candle for Ollie today (Saturday, August 8, 2009). Thank you for remembering our beautiful baby boy.

From the Families of SMA website:

August is National Spinal Muscular Atrophy (SMA) Awareness month. We are making great progress in developing potential treatments and a cure for this disease. This is the time to come together with your communities to raise knowledge of the disease to new heights.

Awareness is the beginning of change. The majority of people do not know about SMA until it directly affects their family. Even the letters SMA don’t ring a bell with many doctors, nurses and community members. This is where you can help.

What you can do:

Plan to get involved and spread awareness of Spinal Muscular Atrophy with the ideas and materials here and here.
(You can download these materials or call the FSMA office at 800-886-1762 for printed materials.)

Grass-roots Efforts are the foundation of this campaign.
Whether organizing bake or craft sales or setting up candlelight vigils to honor the children who have died, there are many ways to take proactive steps to help Families of SMA raise awareness to help find a treatment and cure.

Today was a beautiful day

Today we celebrated Ollie's life.

It was beautiful.

So many came out to join with us in saying goodbye to our little man that we were overwhelmed by the love and fellowship. The Shady Wagon Farm was such a beautiful and peaceful site to hold the service and the owners so warm and friendly to all of us.

Pastor Glen's message was uplifting and weather was gorgeous. I cannot think it a coincidence that a golden butterfly fluttered through just as he began.

Robin and Cece - the craft project was wonderful. Ollie loved pinwheels and the breeze that came up to allow them to spin on their own at just the right time was so touching.

Scott - story time and sing-a-long were so sweet and touching. I think Ollie was highly entertained.

I've had several requests to upload my remarks and I'll do so on the blog pretty soon. I'll also put up the slideshow of Ollie's life on Picasa and/or Youtube.

And thanks to all of you folks from the Flotsam Blog (fantastic place BTW!!!!) for coming over to pass on your heartwarming condolences as well as for all those you left on Flotsam. Getting the word out about SMA is so important. Ollie's life meant so much to his family and friends, we want to make sure it means something to the rest of the world, too.

Peace.

Ollie's Biography and Celebration of His Life

Yesterday still seems unreal. This morning we woke and I suppose hoped it was all an incredibly bad dream. Unfortunately, it was all too real. Ollie's gone but we will ALWAYS have our memories and his smile.

Today, we met with the wonderful people at the Cremation Society of the Carolinas to make plans for Oliver's service.

You can read the biography we put together on their site.

The Celebration of Oliver's Life will be held at 12Noon on Friday, August 7, 2009 at Shady Wagon Farm in New Hill, NC. It's a beautiful outdoor site with a pond and ducks and is the sort of place that would have given Oliver lots to look at and smile about.

2312 Pea Ridge Rd
New Hill, NC 27562-8940
(919) 542-7172
http://www.shadywagonfarm.com

Click here to bring up Google Maps and enter your own address for directions.

EDIT: A few folks have looked for basic guidance on getting there. From Raleigh and points east, you can take US 1 South towards Sanford. Take Exit 81 (Pea Ridge Rd) and make a right. The farm is just a couple of miles down the road.

From Greensboro and parts west, take US 421 South out of Greensboro toward Siler City and pick up US 64 East towards Pittsboro. Take a right on Beaver Creek Rd, drive for about 3 miles then take a right onto Pea Ridge Rd and drive for another 3 miles to the farm.

(Raleigh/East folks can also take US 64, just making a left on Beaver Creek - it's supposed to be a bit more scenic if longer).

This event is open for any who want to come with the only limitation being actual room at the site.

Please note, since this is intended to be a celebration and will also take place at least partially outdoors, dress appropriately. Casual or business casual attire will be fine. We don't expect suits and dresses (but they are fine if you must). Ollie was most comfortable half naked in a diaper, he wasn't down with fancy clothes. ;-)

There will be a potluck dinner after the service. If you wish to stay, please bring your favorite dish.

Sadness

It is so hard to type these words. Almost as hard as it was to say them.

Oliver's gone.

Two days shy of his first birthday.

While Neil and I had prepared ourselves (as much as is humanly possible), it still hurts so much that words cannot begin to describe it.

Thank you so much for your support and thoughts throughout this journey.

Please continue to pray for us.

Sent from my BlackBerry

New Statistics on Carrier Frequency in North America

Neil and I are big proponents of carrier testing for SMA. We have both been tested and confirmed as carriers. Neil's (wonderful) sister, Amanda, got her results back and she is not a carrier. We are so thrilled for her and her husband, Philip. As I like to say, "Currently, prevention is the only cure."

It used to be estimated that carrier rate was between 1 in 40 and 1 in 60. However, a recent post on the Families of SMA website revealed more accurate statistics for North Americans.

Genzyme Genetics Publishes a Paper Showing Carrier Rates for Spinal Muscular Atrophy.

July 27, 2009.

The paper entitled "Differences in SMN1 allele frequencies among ethnic groups within North America" indicates that although there is a carrier rate between 1 in 25 and 1 in 50 in the general population, this can differ significantly among ethnic groups.

SMA is considered to be a pan-ethnic disease. However, carrier frequencies for many ethnicities, including most ethnic groups in North America, are unknown. To provide an accurate assessment of SMN1 mutation carrier frequencies in African American, Ashkenazi Jewish, Asian, Caucasian, and Hispanic populations, more than 1,000 specimens in each ethnic group were tested using a clinically validated, quantitative real-time PCR assay that measures exon 7 copy number.

The observed one-copy genotype frequency was 1 in 37 (2.7%) in Caucasian, 1 in 46 (2.2%) in Ashkenazi Jewish, 1 in 56 (1.8%) in Asian, 1 in 91 (1.1%) in African American, and 1 in 125 (0.8%) in Hispanic specimens. Additionally, an unusually high frequency of alleles with multiple copies of SMN1 was identified in the African American group (27% compared to 3.3% - 8.1%). This latter finding has clinical implications for providing accurate adjusted genetic risk assessments to the African American population.

The implications of this work are most significant for Hispanic patients who carry lower risks of SMN1 mutations and for African American patients who bear increased frequencies of two-copy alleles. These data will facilitate the accurate interpretation of clinical testing results and provide additional information for genetic counseling.

Differences in the frequency of SMA carriers were significant among several ethnic groups. This study provides an accurate assessment of allele frequencies and estimates of adjusted genetic risk that were previously unavailable to clinicians and patients considering testing.

Click here to read the full journal article.

When Neil and I were seeing a fertility specialist to get pregnant with Oliver, we were encouraged to get carrier testing for Cystic Fibrosis. But not for Spinal Muscular Atrophy.