When Daniel "Little D" Sullivan, the only son of Daniel and Susan Sullivan, was diagnosed with metachromatic leukodystrophy (MLD) back in 2014, his parents could not believe what the doctors were telling them.
How could the bright little boy who adored robots and laughed and smiled all the time be dying? When they learned how there was no treatment available, and the majority of children with the disease don't survive beyond the age of six: the Sullivans were determined to enjoy the time they had left with their son. This meant trips to the zoo, Disney, seeing family and friends and even taking a cruise. Little D's amazing parents understood that the only way for them to fight MLD was to fill Little D's life with joy. Even though the disease progressed quickly and would rob him of the ability to walk, talk, and feed himself within months of his diagnosis, joy was not something leukodystrophy could steal away so easily.
The Sullivans understand how difficult it is to find a way to balance your pain over a leukodystrophy diagnosis with the need to bring magic and meaning into a terminally-ill child's life. They also understand that families cannot do this on their own.
Little D passed away, at home, surrounded by his family on the morning of December 29th.
In lieu of flowers or trays of lasagna, the Sullivans have requested that you make gifts to Little D's Joy Fund to celebrate his life and help other children and families.
All the money will be used to make high impact gifts to leukodystrophy families to help to support them as they care for a child with leukodystrophy.
The fund will be overseen by Little D's parents: Susan and Dan Sullivan.
Since the fund is operated through the Calliope Joy Foundation, please make checks payable to The Calliope Joy Foundation, 420 Conshohocken State Road, Bala Cynwyd, PA 19004. Please note that the gift is designated for the Little D's Joy Fund.
Your gifts are 100 percent tax deductible, the Calliope Joy Foundation is a registered 501(c)3 in the Commonwealth of Pennsylvania (tax identification number 90-1005140).
Please email: firstname.lastname@example.org if you have any questions.
Learn more about the Calliope Joy Foundation at www.thecalliopejoyfoundation.org.