Gracie Haran is a sweet adorable nine year old. Approximately ten years ago her parents, Eddie and Julie (Jules) Haran decided they wanted to have a child and chose to adopt. They traveled to South Korea in the spring of 2009, and brought nine month old Gracie home.
Gracie adjusted to her loving family and brought much joy to all who knew her. Tragically, prior to becoming of school age, Gracie’s health began to gradually decline and abilities she once possessed became less developed and or lost. After countless medical consults and test upon test, Gracie was diagnosed with a rare genetic neurological disease, Infantile Neuroaxonal Dystrophy.
There is currently no cure or specific treatment for this progressive disease, however, there is much WE can do to help provide Gracie with the quality of life that she deserves.
Gracie is confined to a wheelchair and has limited speech and mobility. She is fed through a feeding tube. Gracie attends a fantastic special education school in Toms River and loves her therapeutic swimming.
Current urgent needs are a chair lift that will allow Gracie to safely travel up and down the stairs in her home and no longer have to be carried by her parents.
Gracie weighs approximately 75 lbs. and must be carried up and down the stairs to and from her second floor bedroom several times each day.
Gracie also needs a handicapped accessible van to transport her and her wheelchair safely. The vehicle needs to be equipped with a lift so that Gracie can be securely and safely transported to her appointments and other places.
As her disease progresses there will be additional expenses that insurance will not cover. With that in mind, several of us who have known the Haran Family for many years through the Hillsborough High School Band decided to try to help by organizing this campaign.
I have known Gracie since she joined her family, and had the privilege of taking care of her for the first three years here. I have been happy to help Ray "Mr F" Fantuzzi, a friend and past associate band director, who worked tirelessly to figure out how to put it all together.
Gracie has touched many lives both within and outside the Band Family, and we hope to reach as many of those people as we can.
If we can raise enough for a stair lift and a handicapped accessible vehicle it will make such a difference!!!
We have set this up so only the Haran Family may access whatever funds your generosity provides. None of it will be used by those of us organizing this drive for any expenses.
With your help, we can raise over $100,000 to make a difference in the life of this amazing nine year old!
- Hope Mazzone
- Patty Waller
- Joseph Baricelli
- Courtney Johnson
- Eastern Wind Symphony
Organizer and beneficiary
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