Saturday, August 11, 2012

SMA Awareness Month

August is SMA Awareness month. It is also the month that SMA took my daughter's life.

Many of you have been following this blog for some time, but for those of you who haven't, let me tell you a little about SMA... For those of you who already know, please share this around to spread awareness! It's going to take the effort of many to fight this horrific disorder.

Spinal Muscular Atrophy is a recessive genetic disorder that does not discriminate. One in 40 people are carriers and one in 6,000 babies are born with it every year - 60-70% of those are born with SMA type 1... the most severe form. Most type 1 babies don't live to see their second birthday. Unfortunately, Skylar was one of those babies. She died just a few months shy of her 2nd birthday.

SMA is caused from a missing SMN1 gene. Without getting to technical, it's responsible for the survival motor neuron protein. Babies with SMA are born without it, but have various numbers of the back up SMN2 protein which contribute to the different types of SMA. Unfortunately, this SMN2 is not enough to sustain normal function of the motor neurons and the muscles start to atrophy. There is no cure. Eventually, babies and children lose the ability to move, swallow and breathe... and then die. It is cruel.

On August 8th and 9th, I had the honor of partnering with Quest Diagnostics to speak at two dinner events for medical professionals to share my story and also push for carrier screening as well as newborn testing for SMA. Most of the time, I can talk about SMA and our story without losing it. However, this month has been an exception.

As we're approaching the year anniversary of losing our daughter, my emotions are everywhere.

On the 8th, I was able to photograph a friend giving birth naturally at home and witness a life entering the world. It was amazing. I hope to share pictures on the Shutter Sweet blog. I was full of excitement, but knowing full well that we're not guaranteed anything - including a healthy child - I prayed for their baby and their family. Everything went well and I left that afternoon in awe of the miracle of life once again. I re-lived my labor and delivery with Skylar. Sadness came over me as I thought about never getting to have that opportunity again, but I was so thankful that I got to experience it once and have a great memory of it.

The family I photographed giving birth that day was closely connected to the family I photographed who lost their baby in the NICU a few years ago and they were on my mind all day. I was sharing in the pain and hurt of the loss of their son while also sharing the joy for this other family who were blessed with a son. After sitting with my emotions for an hour or two, I was on my way to Stockbridge to speak at the first dinner. Needless to say, as soon as I got up to speak, it was a struggle to hold back the tears. I learned my lesson and did not wear mascara to the second dinner in Buckhead the next night.

This month, memories have been flooding my mind and my heart. I think about the various things we did with Skylar before she passed away. I re-live the day we lost her as well as the day we buried her... over and over. I try not to think about it, but this month, it's been hard not to. The weight on my heart is heavy.

I see how far we've come, but I also see how far we have yet to go. It's hard to believe a year has passed without our sweet girl. We've experienced healing and peace, but we've also had to fight against anger and bitterness.

I've tried to keep busy this month and have had some major things going on with work. I helped launch a company called Online Tech Experts with a guy from my church. I designed the website ( and am contracted to run their marketing and PR for a while. It's been exciting. We have over 30 tech experts ready to remotely fix computers, remove viruses, help with email trouble, etc. and have already seen some great responses. Please check it out and share it with people you know who may need computer help!

I've also been busy helping launch a non-profit organization called GoodStars and the fundraising campaign on IndieGoGo to provide job grants to those in need. Their partner, the Starburst8 Initiative, will be launching over 100 privately held companies over the next 5 years to hopefully improve our unemployment rates here in America. They are currently hiring for two companies right now. It's a crazy large scale plan, but it might just work :) I'm excited to see how successful it will be.

I've still be busy with photo shoots, weddings and Shutter Sweet Photography stuff as well. I love my job. I am so happy that I have the opportunity to pursue what I love right now. I would be a lot less happy if I had to go back to corporate America and sit in an office all day, not to mention fight Atlanta traffic. Let's just say I am extremely grateful for Kyle's job and his support!!!

We're doing well all things considered and are thankful for great friends and family. Without the support from those we love and the peace and comfort we've received through our faith, I honestly don't know where we'd be - it's a scary thought.

Despite our heavy hearts, we've been able to enjoy each other's company and grow in our relationship. We're still planning on building our home (we bought some house plans and are waiting for a quote from a builder) and will keep you updated as things progress.

Thank you for your continued support in reading this blog and commenting when you feel like it. I know I'm not alone in suffering and hope that we can all help each other out when the time calls for it. Have a wonderful weekend and please help me spread the word about SMA! Peace.


  1. Still thinking about you guys all the time. Love you bunches. xoxo

  2. Skylar is such a blessing! You and Kyle are amazing! I am simply proud and honored.