Orlando, FL, July 27, 2015 –(PR.com)– Emmalee Campbell was born with a relatively unknown genetic disorder, 1p36 Deletion Syndrome. Her parents are trying to raise money to help her enjoy one of the simplest pleasures of childhood — riding a bike.
1p36 Deletion Syndrome is a chromosome disorder that can be characterized by moderate to severe intellectual disability, delayed growth, low muscle tone, limited speech ability and distinct facial features. It is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. Though many people have never heard of 1p36 Deletion Syndrome, it is the one of the most common chromosome deletions.
Emmas (as she is called often by her family) was diagnosed at age 2 with 1p36. Because it is relatively new – it can only be detected through specific testing called microarray genetic testing.
Emmalee struggled during the early years of her life, having seizures, multiple surgeries, including on her heart (Amplatzer Occluder being implanted). Emmalee cannot speak, but has learned over 100 signs (ASL). Because struggles to walk she utilizes a children’s wheelchair but is the happiest little girl you ever would meet, according to her parents, John and Tracee Campbell.
“Her smiles are precious, her hugs melt your heart, and she doesn’t have a mean bone in her body,” said father John. “She loves her younger brother Johnny, animals, smart device apps, and being outside.”
Right now Johnny & Tracee are working hard in Orlando, Fl, where Tracee has led the efforts for the annual 1p36 Deletion Support & Awareness conference that brings families with 1p36 children together to learn, grow and share with those that fully understand what daily life is like. Johnny and Tracee have been working very hard to save money to buy Emmas an adaptive bike –a custom special needs bike (pink of course) that will allow her to ride independently and enjoy bike riding the way typical children are able to.
Emmalee’s parents do not receive any government assistance for her therapy and medical needs. 1p36 Deletion Syndrome is not yet on the pre-approved list for government support the way other chromosome disorders, such as Down Syndrome, is. To help their little girl be able to enjoy one of the simplest childhood joys of riding a bike, they have created a GoFundMe page and are asking for support of friends, family and caring individuals in their community and beyond. Please consider supporting Emmalee’s GoFundMe page, here http://www.gofundme.com/emmaleebike1p36.
For more information about 1p36 Deletion Syndrome, visit http://www.1p36dsa.org/. To contact John or Tracee Campbell with questions for possible media stories, contact John’s sister, Bridget Levitz at firstname.lastname@example.org.
Tracee & John Campbell