I don’t usually post this kind of stuff. I see pleas for help every day and while the stories may strike me, I don’t usually pass it on. But today is different.
I want you to know about Hailey and Carter.
The Goranflo family lost their 7 year old daughter, Hailey just a few weeks ago and now they are in a desperate fight to save the life of their 4 year old son. You can read their story here.
Press Release:
(February 7, 2010 – Louisville, KY) – Despite the tragic loss of their 7-year-old daughter to a rare, incurable disease, one family has found courage and hope.
Now they are inspiring people across the globe.
Days after losing their daughter, Hailey, to Late Infantile Batten Disease (a genetic, neurological disorder with no known cure) her parents Neil and Miranda Goranflo turned their attention to their remaining child Carter.
He also has Battens.
Family friend Mark Gnaw says, “They are so strong. I don’t know how they do it, but they do, and I find hope in that.” It’s a sentiment they are hearing a lot lately.
“We can’t sit around and do nothing. We can’t bury another child,” Miranda said in a press conference one week ago, where they unveiled an ambitious plan to save Carter’s life: a social media networking campaign aimed at raising $1 million by February 14th.
The money is planned to help fund a trial study being conducted at Cornell University, led by Dr. Ronald Crystal, a leader in gene replacement therapy. Although specific details for the study are still under consideration, the Goranflo’s plan is to be ready once those details are in place.
The aggressive internet campaign they are calling the Valentines Day Miracle seeks to drive at least 100,000 people to www.haileyandcartersdream.com on or before Valentines Day to give a simple gift of $10 each.
In its first week, it has spread across three continents and generated celebrity, political and media attention in the US. Early donations have come in from 16 US states plus Canada, Switzerland and the UK.
“People like to help, they don’t mind giving,” said Carter’s uncle, Mike Roberts, who’s assisting the family with the campaign. “But we felt it had to be simple and easy,” he continued “so we did that and the response has been overwhelming.”
Included in their aspirations for extra money would be a foundation in Hailey’s name to help Batten families as well as fund more research into gene therapy which has implications for Parkinson’s, Alzheimer’s, Cystic Fibrosis, heart disease, MS, ALS, rare/orphan diseases, and AIDS.
Driven by hope and giving inspiration to thousands in the process, Carter’s father, Neil, said “this could mean Carter and a lot of others have a fighting chance. His big sister would be proud.”
Please direct further media inquiries to Mike Roberts, mikeeroberts@yahoo.com, 815-505-2406
The Goranflo family are seeking donations of only $10.00 on or before Valentines Day to help raise the money to pay for their son to be included in this life changing study. Their website has many ways to donate including, paypal, visa, and walking it in to a Fifth Third Bank. Won’t you please help them?
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