May 30, 2006....Our lives quickly changed as we welcomed this beautiful baby girl into our hearts.  From the beginning, Annabelle has been a sweet, easy-going, and socialable girl. A song or a smothering of kisses could bring a smile to her face even during her roughest moments.            At Annabelle's 4 month pediatrician appointment, I pointed out to the doctor a peculiar bump in her spine.  The pediatrician thought nothing of it at the time but provided us with a referral for xrays to further investigate.  I knew something was amiss when the radiologist came into the room to see her and was very evasive to my directed questions about her xrays.  A day later, the pediatrician called me at home and that was the first time I heard the word "mucopolysacchridosis". Over a period of two months, several invasive test, and many, many tears later, the diagnosis was confirmed.  Annabelle has Morquio Syndrome Type A.  As my husband and I learned more and more about this disease and the long term effects, it was heart wrenching.  At the same time, we were also digesting the fact that there is no treatment or cure at this time.  We took Annabelle to see the most prominent doctors in the field of genetics and still the answers remained the same.  In general, we were advised to take it one day at time and with good medical care we could help to prolong her life and better maintain a good quality of life. The very thought that Annabelle would have a difficult medical road ahead which would include many surgeries broke my heart into a million pieces.

Nonetheless, this darling child continues to be happy, smiling and full of love for every person in her presence.  Up until a few months ago her bone changes had been minor.  However, at the age of two she will undergo her first major surgery.  As with many Morquio patients, Annabelle's spinal cord in her neck area is impinged by the vertebrae.  Annabelle is scheduled for surgery with Dr Mackenzie at Dupont Hospital in September 2008 to relieve the pressure on her cord and fuse the cervical vertebrae area.  Her recovery will most likey include 3 months of a medical halo. 

This is only the beginning of our journey with Morquio Syndrome.  We know there will be hardships but we also feel that Annabelle has been a gift in our lives.  She has already taught me about patience and endurance.  She has taught me the importance of appreciating each day of our lives together.  We don't live for yesterday or tommorrow.  We will strive to live each joyous day as it comes.

To learn more about our journey, please visit: www.caringbridge.org/visit/belle

2008 White House Easter Egg Roll  Stephanie, Austin, and Belle

Belle in Physical Therapy following her Spinal Decompression and Fusion Surgery.  She  loves to SWING!!!!