First Post

This article ran in our neighborhood newspaper.  I thought it was perfect for my first post. 

My name is Abby Gray and I have a daughter with Cystic Fibrosis.  Lately, I feel like that is what defines me.  If you asked me 3 years ago what defined me it would have been my job or my husband or my love for cooking.  But now, fighting this disease  is my drive, my focus and my all.  Because my daughter is my ALL. 

The worse day of my life was the day of the diagnosis.  It was February 29^th, 2008 at 9:10 am.  Avery and I were in my bed.  She was a month old and the most precious thing I had ever seen.  I was feeding her in my lap with pillows propped up.  I was so exhausted, but overjoyed at this little lump I was looking at.  Then I got the phone call.  My pediatrician, Dr Padrez let me know Avery’s sweat test came back positive.  I was shocked. We had a sweat test the day before, but I knew the odds. It was likely she would NOT have CF. I clicked off the phone and held Avery to my chest and yelled.  I yelled a guttural cry I didn’t even know I could make.  I thought my days with Avery were limited.  I couldn’t believe God could put her in my life just to take her away so fast.  I still feel bad to this day that in her first month of life she had to witness me that way.  I only hope she doesn’t hold onto any anxiety because of it.  My husband came home, fast.  We cried and cried.  Her first year of life was a blur of dealing with a newborn, a chronic illness, and the strain of learning about CF and what that might mean for our daughter’s future (or something like that).

Avery is now 3 years old and is feisty and loud and just an overall joy.  She smiles all the time, and everyone comments that she is one of the happiest kids they know. She loves puzzles and can be found in the living room with a Super Why or a Disney Princess puzzle.  She plays on a neighborhood soccer team, Pinkalicious, has dress up play dates, and goes to gymnastics.  That is her normal life.  Her CF life consists of twice a day rounds of nebulizers, twice a day “shakey vest” that vibrates her lungs, lots of medicine, and supplementing her meals through the feeding tube in her stomach.  Avery has to take 6 pills before she eats a meal to help her digest her food.  This is all to keep her healthy.  When she is sick she has to do four times a day nebulizers and shakey vests.  Avery caught a cold in November as was hospitalized for 10 days.  It was a long stay, but something we will have to get used to. While treatments, medicine, food take up hours of very day, we try not to let CF crowd her normal life.

The thought of losing Avery is something I try not to dwell on.  There are many new therapies and drugs coming out.  There was positive news announced on February 23^rd that a new drug has relieved symptoms in CF patients with a certain mutation.  Although Avery does not have that certain mutation, we are hopeful that soon there will be  drugs to target her mutations.  My friend at the CF Foundation (CFF) said this was the biggest news in the last 15 years of this disease!  The foundation is the reason we have hope for our daughter to go to college, to get married one day, have kids of her own, grow old and gray.  The CFF funds most if not all of the new drugs that are for CF patients.   They also fund CF Centers where we receive our care.  We feel it is our responsibility to give back to CFF, because they are helping our daughter. 

We are hosting our second annual Picture This Cure benefiting the Cystic Fibrosis Foundation on April 16^th from 7-11pm at the Star Creek Clubhouse (2110 Starcreek Pkwy, Allen, TX 75013).   The evening will feature a silent auction, wine, appetizers, and entertainment.  Last year we had a great time meeting new people and doing it for a good cause.  We raised over $7000 last year for CFF and hope to surpass that this year.  It is free to come and the dress is black, white, or red casual.  We would love for you to come!