Love for Gabby, Michael and Nicole

This spring, my brother Michael and sister in law Nicole noticed their sweet, happy, healthy baby girl Gabby was suddenly having trouble walking.  After several days at Mass General Hospital in Boston, MA.... after CT Scans, MRI, and a visit from a world reknown neurologist from Austria, they were sent home with devastating news on June 27th: Gabby has a rare gentetic and incurable disease that will cut her life tragically short and strip away her abilities very rapidly.

Gabby has infantile metochromatic leukodystrophy. Here is a description from the Child Neurology Foundation:

Late infantile MLD typically begins between 12 and 20 months following birth. Infants appear normal at first but develop difficulty walking after the first year of life and eventually lose the ability to walk. Other symptoms include muscle wasting and weakness, developmental delays, progressive loss of vision leading to blindness, impaired swallowing and need for feeding tubes, seizures, and loss of some cognitive functions. The life expectancy of a child with late infantile MLD is between the ages of 5-10 years old.   

Michael and Nicole worked very hard to bring Gabby into this world.  After years of waiting for their blessing to come, and after a rough pregnancy, they committed to be (and truly are) the most devoted, loving parents to their adorable 2 year old, Gabriella Molly DiStefano . 

My neice, Gabby is the most beautiful little angel, with infectious laughter and the sweetest smile. She loves to sing “Twinkle Twinkle Little Star” and wear her tutu dresses. Her favorite Disney princess is Moana. She enjoys playing with her play kitchen and being the chef. Her favorite game is goofing with her brother Hanky (their family dog) in her little ball pit. If you ask her “who do you love?”  She says “Mama, Dada”!! 

We want to give this giggly, happy, singing baby girl the most joy in her time with us and give Michael and Nicole all the support they can get to enjoy more of these precious but limited moments with their daughter. So I started this Go Fund Me, Love for Gabby, Michael, and Nicole  to support their young family at this difficult time —doctors have advised them that these are Gabby's best days. Let’s make sure they can enjoy this time, give Gabby the best quality of life, get all the treatment and therapies and support they will undoubtedly need —without the financial burden.  

Michael and Nicole will need this financial support and will benefit greatly from the generosity of  friends, family, and the community. Funds will be used towards critical medical care, including medications, treatments, therapies, and equipment, that their current insurance may not cover or may not cover 100%.  Funds can also supplement income for time off from work that Michael will need to take. But most importantly these funds are used to remove any and all financial burden so that Gabby and her parents can just live in the moment, and enjoy every second they have together to the best of their abilities.  

Your prayers, thoughts, words of compassion and generosity to this young and heartbroken family is appreciated!