Kutztown High School junior Christina Whitehead, 17, will undergo a bone marrow transplant in hopes of curing sickle cell disease, an inherited blood disorder with life threatening complications and pain episodes that often mean hospitalization.
Two benefits are scheduled to help raise funds. Cells & Hearts Christina’s Bone Marrow Transplant Benefit Fundraiser will be held from 1 to 4 p.m. on Feb. 6 at Kutztown Fire Company and Bunco for Christina’s Cause from 6 to 10 p.m. on Feb. 27 at Reformation Lutheran Church in Reifton.
“She deserves a chance to live a life without the pain, without the hospitals, the doctors, and to be able to live,” said her mother Donna. “She’s lost most of her childhood but we want her to be able to live a long and happy life.”
The bone marrow transplant procedure is scheduled for March at the Children’s Hospital of Philadelphia. Recovery is about six months.
“It will change a lot because I want to be a nurse or do something with kids when I’m older and now I can’t have a job because I could be 100 percent fine and then two seconds later double over in pain and the pain could last minutes, hours, days, weeks,” said Christina. “It feels like an elephant sitting on my chest when the pain is in my chest or a hammer to my knee. That’s how sickle cell feels, throbbing, aching pain and sometimes it’s little needles. Different parts of the body, the pain feels different.”
Christina would like to be able to hang out with friends or be out in the snow or swim in cold water, things she cannot do because of the disease.
“I just want the pain to stop, to have a normal life,” said Christina. “To not have to deal with the pain everyday.”
Donna said Christina was hospitalized this fall at least 10 days each month. They estimate that Christina has been hospitalized at least 100 times since her diagnosis at age 2, after the Whitehead family adopted her from Liberia. In addition to the many hospitalizations, there have been surgeries and blood transfusions over the years.
“There’s no kind of normal life,” said Donna. “It’s hard to be 17 and loving life and not be a part of life.”
Christina attends Kutztown High School part time, attending two classes a day. Donna is grateful that the school district has adapted and met her needs throughout her academic career.
“Everyday is a different day and that’s how we live our life,” said Donna. “Some days are tough. She just keeps going. She doesn’t stop, she just keeps trying.”
Their hope is that the bone marrow transplant will be a cure for the disease. After being told the low odds of being able to find a donor match, a match was found a few weeks after Christina was tested.
“That was some sort of sign,” said Donna.
“I’m happy and scared,” said Christina. “But it’s going to be all worth it.”
“We’ve tried everything. We have a great team of doctors,” said Donna. “It’s just been a very difficult life for her but at the same time she’s on the dance team.”
Donna said dance is good exercise and a form of therapy.
“It’s just like one big dance family,” said Christina. “The best thing in my life is dance because I love to dance,” said Christina. “I don’t care how many times I was in the hospital, I’m determined to always dance.”
The Kutztown Indoor Association Dance Team, coached by Jennifer Traylor, made it to finals in Wildwood, N.J. and Christina was to dance but afterward collapsed and was hospitalized.
“It’s very frustrating for me as a parent,” said Donna, who is also the biological mother of five boys. “I live in fear. The doctors do what they can but she’s at risk for a stroke depending on where the sickle cell happens.”
Christina’s gall bladder was removed at age 10 and her spleen is gone.
“There are things that happen as a result of complications,” said Donna. “Does Christina look ill? No, she doesn’t look ill but pain can come on so quickly and so strongly. She’ll try to do something, the pain will hit and I will get her and take her home. Nobody sees the next what could be a few hours, a day or two, or two or three weeks.”
“No one ever sees everything we went through in the hospital, how much pain I was in or the crying and being upset that I’m missing things,” added Christina.
“It’s a very misunderstood process because she leaves looking okay,” said Donna. “I go get her and we disappear and she returns better. Nobody has any understanding of that middle time period and therefore doesn’t have an understanding of what it means and how critical things are.”
According to Sickle Cell Disease Association of America, Inc., http://www.sicklecelldisease.org/, “Sickle cell disease is an inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels. When sickle-shaped cells block small blood vessels, less blood can each that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. This is what causes the complications of sickle cell disease.”
Donna said when the sickle-shaped cells block vessels, it causes pain.
Regarding the bone marrow transplant, Donna said, “This is her chance.”
Unable to work while caring for Christina, Donna said the fundraisers will help with expenses such as copays, transportation and living expenses.
Cells & Hearts Christina’s Bone Marrow Transplant Benefit Fundraiser will be held from 1 to 4 p.m. on Feb. 6 at Kutztown Fire Company.
“There has been real community involvement,” said Donna. “People are going above and beyond which is amazing and overwhelming.”
Organized by Donna’s sister Kathy Vosburg, the benefit vendor bingo event has received help in the form of donations from community members, businesses and organizations like the Kutztown Optimist Club and the Kutztown Hobos. Kutztown University students have also volunteered to help at the event that features Valentine treats, vendors, raffle, bake sale, candy sale and children’s activities.
To purchase tickets, call 717-870-1302 or email kmhc102@comcast.net or call 610-301-3829 or dnrdc@msn.com.
A family friend, Diane Marsden, is also organizing Bunco for Christina’s Cause from 6 to 10 p.m. on Feb. 27 at Reformation Lutheran Church in Reifton. Includes dinner, Bunco with prizes and silent auction ticket. The theme is zebra print so anyone who wears black and white receives a free silent auction ticket and anyone who wears zebra print or zebra accessories receives two free tickets.
RSVP to Marsden by Feb. 17 at by calling 610-413-8400.
