Sunday, March 13, 2011

Our story

I’m sorry to be loading you up with information with the recent posts.  I’m finding it easier to be able to blog about the majority of the questions we get, and share those links.  So, with that being said, here is another info post about our story.  I know friends and family know our story, but we have a lot of new supporters, that I think this will provide them with some insight.  I think it’s important for our supporters, new friends and anyone who cheers for us from afar, to know exactly what they are supporting and cheering for.

Thank you again for being here.  Let’s start with a little background.

Gavin was a challenged pregnancy.  We thought we lost him at about 9 weeks, then we were told we were in the process of losing the pregnancy.  Then I was told to be on bedrest until about 6-7 months.  It was a long, haul.  Up until he was considered "full term" I was so scared of losing my baby.

Gavin was born happy and healthy on Oct. 2, 2008.  I was having problems after the C-section, and taken away for about 8 hours until they can control all my vitals.  I saw him for 1 minute and that was it.  I was pretty drugged up, and they wheeled me off pretty quickly to try to control the situation.  When I finally was able to see him face to face, many hours later that night, it hit me.

I told Troy that something was not right.

He blamed it on the numerous of drugs I was on.  I did too.  The nagging, pit of my stomach sense that I had, that something was not right - didn't leave.  It held on, and none of my own convincing allowed it to take a back seat.  It stayed with me until we left the hospital, and days and weeks following.  I thought I was going crazy, and I also started thinking that something was wrong with me, and maybe it was from the months of worrying about every minute of the day that I was going to lose the pregnancy.  I truly thought I was headed to the white padded room with no windows.  I brought it up to the pediatricians, nurses.  Everything came back fine.  I knew his eyes weren't.

Gavin even passed every eye exam, at every well exam.

Everytime he did, I told them, "HE IS NOT OK!"  I wanted to scream!

Finally at 4 months of age, I was on my knees in my living room.  I cried the deepest cry I have ever cried in my life.  I needed confirmation for my son, or I needed medication for me.  Something was not right, and I felt like I was losing my mind. " PLEASE DON"T LET MY BABY BE BLIND" is what I repeated for about 5 minutes.  I picked myself up off the floor, called Troy, and told him to pick up Landon.  I needed to do something.

I called his pediatrician (whom I adore), and I told him I was on my way.  I informed them very urgently that they needed to see us, and I needed to talk to him AGAIN about his eyes.  I knew that would get me in the door, but I knew I was not leaving that office without a referral to a pediatric opthalmologist.  He sensed it, and wrote me the referral.

Two weeks later, it was confirmed.

Gavin was blind.  There was no cure.  

Gavin's pediatrician called days later, and told me how sorry he was.  Gavin was his first child who was blind, in his practice... and his first LCA patient.

That kind of sets the tone for the next few months.  The anger, sadness, frustration.  Everything I have felt since the day he was born - it was confirmed.  Honestly, I was a little bit relieved.  No, not glad, or happy.  But, FINALLY someone was listening, and there was something wrong.  Mind you, before we went to see Dr. Lee at Children's Hospital, we had no idea what it was.  Some sort of retina dystrophy, but was there an infection that caused his retina to look detiorated, was there something else wrong?  The word cancer and tumor and other awful possibilities were all brought up.  This went on for two weeks before we could see Dr. Lee.

I scoured the internet for information on retina dystrophies, and quit my job, all the same day.  I had just started working again, from home.  I feel like after the information that was given to me... this was going to be a long journey, and Gavin needed me more than I needed my job.

We found the Foundation Fighting Blindness.  They were having "VisionWalk" in a few months.  I had no idea what this was.  Troy and I talked, and that was the start of "Gavin's Groupies."  We needed to channel our sadness.  We needed to do something, and be a part of whatever this is that we are faced with.  We still didn't even know the name for sure - but we did raise almost $10,000 for the Foundation Fighting Blindness in 2.5 months!

We realized, this is the direction we want to go.  We want to challenge this disease, and use Gavin's name for more.  This is bigger than us; bigger than Gavin.  This is our opportunity to share our story, and raise awareness, and raise money for research.  We thought "We can do this."  It took over a year, because honestly I didn't have the mindset nor the fight in me at the beginning to take on a non-profit.  It took about a year, to let it all sink in.  We started the Gavin R Stevens Foundation in June of last year.  Our purpose is to raise money, and awareness.

Why did we start the Gavin R Stevens Foundation?

There are approximately 17 genes that cause LCA.  We don't know yet what gene mutation Gavin is affected with... YET.  We are in the process of testing.  Once it is identified, our hope is to start research on his genetic mutation.  This is where all the money we are raising is going to go.  We want to fund a research team to work directly on Gavin's type of LCA.  We are getting there!  We need to get his gene identified, and then can proceed with research.  The big focus is on the RPE65 gene - which has been HUGE!  Medical science reminds us that we can move forward with hope.  Eventually what we are doing will help Gavin, and others with LCA!

You are all part of something that will potentially change the direction of medical science and LCA.  We have a long ways to go.  There is a lot of work that needs to be done.  I always say, we may not be doctors or scientists; but we can do our job by raising money and raising awareness!  Troy and I envisioned this, and it’s all unfolding before our eyes, although we didn’t have the strength to work on this until Gavin was a year old.

We are beyond blessed to have you support directly, or afar.  To cheer us on, or to share our story and our links.  The numerous emails that I receive of support, or of fundraising you are doing to help us - is incredible.  ALL the money is going to research!  You are a part of this journey with us, and a reason behind one day, Gavin possibly having some vision in his life.

We couldn't be more proud of our friends, family and those that have already made a difference in our lives.

I have sadness for my son.  I have hope for my son.  Because of all of your support, I have gratefulness overflowing in my heart.  Thank you for learning about our story.  The very fact that your interest lies in our little boy, makes us proud, humbled and feeling like we are truly making a difference.  With your help, I know we will.



  1. Thank you for sharing. I knew bits and pieces but thankful to hear your story. What a little champ!

    All our best always
    The Pliorette Family

  2. Sometimes things happen in your life, and you wonder if there's anything you can do about it. What a wonderful journey your family is on! Doing exactly what I know you were meant to do.

  3. Your story resonates with ours so much!
    We discovered that our son (now six) was blind just prior to our adopting him in 2007 - we had a feeling that things weren't quite right at around 3 - 4 months when it became apparent he couldn't fix or focus on anything passed in front of him. The final diagnosis at Great Ormond Street Children's Hospital, London, left us feeling heartbroken - for him, for the life he would have, and for ourselves as a family. It's amazing how quickly the world seems to fold in on you when you hear news like this about your child.
    Like you, we took a short time to take on board what we had known (confirmation really focuses the senses and the drive to find out who and what is available to help) and have, slowly but surely, learned to adapt everyting we do to make our little boy's sense of the world around him a (hopefully) positive and enjoyable one.Just recently we discovered that his mispelt gene type could be GUCY2D - we understand there's a little research in the US on this variant, but as of yet the professora at Moorfields Eye Hospital have no knowledge of any of its research, or of the possiblity for traetment in the near future.
    Now...if only we could eradicate the eyepoking...!


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