Tuesday, March 24, 2009

A Bittersweet Day

I feel compelled to write to tell you about my day today.

This morning I heard from Gerald Weinberg, the President & CEO of the Muscular Dystrophy Association (MDA), asking our family to be on the 2009 Jerry Lewis MDA Telethon in Las Vegas. I was honored to be asked to represent so many families living with myotonic dystrophy and to be able to tell Kayla's story to help raise awareness for this disease. We have been able to share Kayla's story for the last three years in the Sacramento area broadcast of the telethon but are especially excited to be able to share her story nationally. The telethon will be aired on local stations throughout the country on September 6th and 7th, over the Labor Day weekend.

Not long after I got that news, I received a call from a grandmother of 4 month old twins who were diagnosed at birth, like Kayla, with congenital myotonic dystrophy. This grandmother had been in touch with me over the last week telling me the story of her grandbabies. They were in the NICU for 86 days after their birth. I felt an instant connection with her and was so amazed at the similarities of our stories. She reminded me a lot of my mom, better known as Grandma Jane by her 8 grandkids. The baby's father also called yesterday to talk with me about one of the twins who had gotten sick and was rushed to the hospital yesterday. The baby was sent in for exploratory surgery yesterday and not long after that, died from complications from an intestinal infection. When the grandmother called me this afternoon with this sad news, my heart broke. My heart broke for their family whose lives will never be the same after this, for the twin brother will never get to know his twin sister, for all the families living with this disease who suffer every single day but who get up and fight back and try and stay positive despite their difficult circumstances. Please keep this family in your prayers.

God Bless You Baby Zoi!

We've been on a roller coaster ride since July 2005 and I want to thank all of you for following our story and for supporting our family through this journey. I can't begin to tell you how therapeutic it has been to be able to write about our experiences. And knowing that so many people that I had never met until this experience are out there supporting us helps to ease the pain, so thank you.


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