Everyday is a fight for 4-year-old Taylor Herman of Millvale. While other children her age are running around, jumping and playing, she often times can’t and has to be more careful. Taylor rarely sleeps, is in constant pain, spends a lot of her time on the ground from falling and makes weekly visits to the doctor.
Taylor, a precious gem, is battling Situs Inversus, a disease where her major organs are on the opposite side of their normal position, as well as Charcot-Marie-Tooth disease, an inherited neurological disorder that, according to the National Institute of Neurological Disorders and Stroke, affects the peripheral nerves which lie outside the brain and spinal cord, and supply the muscles and sensory organs in the limbs. It causes loss of muscle tissue as well as touch sensation across various parts of the body.
But for almost a week, Nov. 15-20, Taylor, along with her family, was able to put the woes of her illnesses aside and live like a princess at Walt Disney World courtesy of the Make-A-Wish Greater Pennsylvania and West Virginia.
“It was wonderful, absolutely wonderful. The village down there where all the Make-A-Wish kids stay is such a magical little place. And Disney, itself, is so accommodating and nice,” said Jennifer Herman, Taylor’s mother. “Ever since she’s been back she’s been more happy and loving towards people. It’s just nice that she didn’t have to go to the doctors for a whole week.”
Jennifer, who adopted Taylor after she was placed in her home for foster care at 9 months old, said Taylor wasn’t diagnosed with CMT until a week after her adoption was finalized. She said even if she would have known about Taylor’s disease earlier, it wouldn’t have changed a thing.
“She is and will always be my daughter; no matter what health problems arise. (I) love her to death,” Jennifer said.
Taylor was granted her wish from the renowned organization after her mother, with the help of her doctors, submitted an application. Her application was reviewed and accepted, and the Hermans were soon off to “see princess Aurora” and the other Disney characters.
Jennifer said the recent trip from Make-A-Wish has helped to make her holiday a little more special.
Make-A-Wish is an organization that grants children battling life-threatening medical conditions with wishes to enrich their lives and the lives of their families with hope, strength and joy.
Dana Antikowiak, Marketing and Communications manager for Make-A-Wish Greater Pennsylvania and West Virginia, said, “We were thrilled to be able to grant Taylor’s most heartfelt wish. A wish can have an incredible impact on a child’s life—helping them to feel stronger, more energetic and more willing to fight their condition.
Last year, according to Antikowiak, her chapter, which covers 57 counties in Pennsylvania and all of West Virginia, granted 114 wishes to children in Allegheny County.
She said one of the greatest misconceptions about the organization is that they only grant wishes to children with terminal-illness and that’s just not true. “We grant wishes to children living with life-threatening medical conditions and believe a wish experience fills our families with hope, strength and joy. More than 80 percent of our kids are still fighting.”
And that is just what Taylor is doing—fighting. Jennifer, who describes her daughter as a spunky 4-year-old who is loving and has a personality all of her own, said with the disease progressing, Taylor could end up in a wheelchair.
According to NINDS, CMT affects 1 in 2,500 people in the United States.
Jennifer said Taylor’s day includes waking up after only getting approximately two-hours of sleep due to the constant pain, getting her legs rubbed, putting on her leg braces, being helped up and down the stairs and “usually being on the floor most of the day because she falls.” But she said Taylor keeps “chugging along” and tries to keep up with her 4-year-old sister, Makayla, whom Jennifer adopted from another family. Taylor also sees doctors several times a week and frequently has to be taken to the Emergency Room.
As a mother, Jennifer said her daughter’s disease affects her greatly. “It’s very hard, especially when she doesn’t sleep at night because she’s up crying in pain. Her bones are showing more and more because she’s losing muscle mass; all the surgeries; and just trying to get people to understand that she can’t do stuff because she’ll fall. It’s hard.”
But through it all, Jennifer said she and her family are encouraged and continue to get through it. If there was one thing people could take away from her daughter’s story, she said, “It needs to be known that kids who have any type of special needs, whether it’s autism or anything, they are no different than any other kid and should be treated like it.”
(If there is a child who has reached the age of 2-1/2 and is under 18 and has been diagnosed with a life-threatening disease, they may qualify to have a wish granted. To refer a child, visit greaterpawv.wish.org or call 1-800-676-9474.)
