6-Year-Old Point Pleasant Boro Girl Suffers From Rare Disorder

POINT PLEASANT BORO – Quinn Estelle is a 6-year-old girl from Point Pleasant Boro who is already on an adventure. Sometimes it takes her to California. But the journey takes place mostly at home, and at school.

Quinn was born with a rare chromosomal deletion disorder called Kleefstra Syndrome. She is only one of 500 people in the world that have this diagnosis, according to the family.

Quinn's condition leaves her both physically and mentally challenged and fully dependent on the care from others.

The community, as a result, has rallied to support Quinn as the family has struggled to make ends meet. The therapy program is very important for the 6-year-olf girl, but also costly.

"I can’t even put into words what the thought of being able to provide this therapy program for Quinn and not having to worry about how we are going to pay the bills. Thank you for helping families like ours," the family said on the Homers for Hope page.

A team ran in Quinn's name duirng the Festival-of-the-Sea's 5K run two years ago, rasing more than $200, according to Race Roster.

Mayor Robert Sabosik also recently met with Quinn, and they were visited by Kelsy Bear who is traveling the world and taking pictures with those that are suffering with this disorder.

Quinn has attended Hawkswood, a special needs school in Eatontown. She also has attended a three-week intensive therapy program/camp in California twice per year at a facility called The NAPA Center.

"It is here that she gets necessary neurological and physical rehabilitation and education to help her progress both physically and mentally," according to the Race Roster site.

The family believes this program has helped Quinn to come "as far as she has." But it's been tough.

"We have taken out a line of credit on our home, and pension loans too," the family wrote on the Homers for Hope page. "We have zero in savings and we are finding it very difficult to continue these beneficial therapies for Quinn and make ends meet, let alone having two other kids to care for and make certain they do not have to go without."

Quinn has resided in Point Pleasant Boro with her two moms and two brothers who, friends and family say, simply adore her.

"She responds to each of them in her own way," according to Race Roster. "She loves to swim, swing, bounce, go for bike rides and walks, and absolutely loves to be outside. Quinn has a smile and giggle that is contagious."