Wheatley chosen as Race for a Cause recipient
Disorder limit’s 4-year-old’s quality of life
THOMPSONTOWN — The eighth annual Race for a Cause at Greenwood Raceway is scheduled for this Sunday in Thompsontown. The event was created to help local families with the financial burdens of having a child, or adult, with a life threatening illness. This special race and silent auction has raised more than $61,000 in the past seven years.
This year’s recipient is Sophie Faye Wheatley, 4, of Millerstown, who was recommended by her nurse to be selected for this cause.
Wheatley, daughter of Veronica and Roger Wheatley, and sister of Zoey and Cassidy, is a bright-eyed girl who loves ballet, playing with her sisters and reading books to take her on adventures that her illness doesn’t allow. Sophie is in the process of getting the diagnosis of Mast Cell Activation Disorder, an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis.
Veronica explained that disorder presents itself differently in each patient and for Sophie, her symptoms range from hives and rashes for unknown reasons, asthma, swelling, severe insomnia, stomach aches, vision disruptions, non-regulated temperature, full blown anaphylaxis and breathing issues 90 percent of the time.
Due to insurance, the family receives limited help from nurses, only 18 hours a month, so the family asks for nursing help when Sophie is having severe reactions, special medications need administered or when Veronica is exhausted. Even though Veronica is a nurse, many infusions or injections have to be made by an outside nurse because she isn’t allowed to practice on her own family.
Keeping Sophie healthy is of utmost importance so mundane things like trips to the grocery store or post office, even eating, are always major chore.
“The struggles we have are finding food safe for her to eat,” Veronica said. “We have to carry excessive medications just to go to the post office, anything can set her off.”
She said no one is allowed to touch Sophie when they are out and Sophie is not allowed to touch anything like a shopping cart because of contamination.
“Her body can’t tell what’s good or bad for her body so it throws her into an allergic reaction or asthma event at the hospital which is controlled environment,” Veronica said.
Getting the proper medications for her disorder has also been a struggle. She is in the process of being diagnosed with MCAD and to be properly diagnosed with it, Sophie has to be in the middle of an allergic reaction so testing can be performed while in the reaction before she receives the lifesaving medications. Living one hour away from Geisinger Medical Center in Danville, where she receives treatment, has also been a challenge to get her there in time for the testing.
“We miss that window of time for blood to be drawn before meds are administered,” Veronica said.
The family has even purposely hospitalized Sophie with hopes of her having a severe reaction while there, but that failed as well. Veronica fears that if they don’t ever get the diagnosis on paper and get the medications she needs, they’ll continue to only treat her symptoms her whole life and not the disorder, in turn, she never gets better.
Sophie’s hematology/oncology doctor in Danville has given the family a ray of hope. A world-renown specialist for MCAD is coming to Boston soon and he is trying to get Sophie an appointment with him so he may be able to get her the medications she needs.
“We are trying to keep her healthy until then,” Veronica said. “It’s awesome to have that opportunity and to maybe have my daughter be controlled and live like a normal child.”
Until then, the family lives one day at at time.
When the Wheatley family was notified that Sophie was selected as this year’s Race for a Cause recipient, they were very surprised.
“We’re super excited and super humbled,” Veronica said. “We never really advertised we had a daughter with a disorder, only to family and friends.”
Not wanting the community to know they are struggling, the Wheatley’s hesitated at first at accepting the the raceway’s offer, but did knowing it was a wonderful opportunity for Sophie. Despite her symptoms, the family is planning on taking Sophie to the races on Sunday for a short appearance.
“She’s very excited,” Veronica said. “Her pap use to race there.”
Denise and Ken Chubb, track promoters, said they love being able to give back to the community through this special race.
“It means a lot to help this family,” Denise said. “I’m on a mission to raise $10,000 for them.”
THOMPSONTOWN — The eighth annual Race for a Cause at Greenwood Raceway begins at 9 a.m. with practice and racing starts at 11 a.m.
Funds for Sophie are raised through pit passes, parking fees, lap sponsors, class sponsors, silent auction, Chinese auction, food stand and a T-shirt drive.
If unable to attend, monetary donations may be made to, Race for a Cause, 880 Valley Road, Marysville, PA 17053.
The track is located at 12883 Route 235, Thompsontown. The rain date is Sept. 24.