WESTFIELD - Six-year-old Barbriannia Lanphere has been fighting for air since infancy. Facing one battle for survival after another - including numerous illnesses, a near-death experience, weeks in intensive care and an eventual diagnosis with a rare disease - the vivacious Westfield first-grader has shown bravery well beyond her years.
"Barbriannia is truly a blessing to all," said her mother Rebecca Lanphere. "(She is) a bundle of joy all around. She has the beautiful blue eyes that just puts a smile on anyone around her. She is such a strong little girl."
Born premature, Barbriannia was sick constantly, affected by severe asthma and recurring human respiratory syncytial virus (RSV). The shots she needed for the RSV weren't covered by insurance. The family and their little girl managed as best they could.
A spaghetti dinner benefit for 6-year-old Barbriannia Lanphere will be held Saturday from 4 to 8 p.m. at the Masonic Lodge in Fredonia. Barbrianna will undergo the first of several surgeries Monday to correct a brain malformation.
"Her milestones were achieved at the appropriate age except for talking," Rebecca said. "She didn't start talking until she was almost 4 years old."
Despite her delayed language development and asthma, Barbriannia was able to live as other children her age did until she was stricken extremely ill last summer.
On Aug. 18, 2012, Rebecca received a phone call from Barbriannia's father, telling her that their child wasn't breathing and had turned blue. It was a mother's worst nightmare; in fact, the night before, Rebecca had dreamt that her daughter had died.
"My whole world just stopped," Rebecca recalled. "I couldn't imagine living my life without her."
En route to the hospital, Barbriannia was resuscitated. After a transfer from Westfield Memorial Hospital to another facility, doctors concluded that it was caused by her asthma and couldn't find anything else wrong with Barbriannia. She was able to return home and a few weeks went by without incident, her family grateful for every moment they had to spend with their little girl.
While outside playing with her sisters, Barbriannia went into cardiac arrest again. Her lips were blue, she was pale and had no pulse. Immediately, 911 was called but it took time for the paramedics to arrive; the minutes passed by as slowly as hours. Her mother decided to take action. She performed CPR for seven minutes before the EMTs were on the scene. Barbriannia now had a weak pulse and was making a gurgling sound. She was rushed to the Emergency Room.
After an agonizing hours-long wait, a doctor came into the waiting room and led Barbriannia's parents into a small room and closed the door. Rebecca expected to be told that their daughter didn't make it.
Barbriannia was alive but still wasn't in stable condition. She would have to be transported to the Children's Hospital in Buffalo. The doctor explained that due to the 15 minutes of oxygen deprivation, she might be brain dead.
While they waited for her transfer - due to poor weather, the originally-planned Mercy Flight had to be canceled - Barbriannia's family finally had the opportunity to see her.
"A nurse was breathing for her by squeezing a bag," Rebecca said. "It was unimaginable, to see her this way, so fragile and weak, not knowing if she was going to make it."
There were several harrowing weeks spent in ICU at the Children's Hospital, a machine keeping Barbriannia alive. She incurred pneumonia and two staph infections while hospitalized; the antibiotics caused an allergic reaction. Her parents never left her side, keeping her as comfortable as possible, talking and reading to her, playing the music she had enjoyed hearing at bedtime.
After a week at her bedside, they were able to stay at the Ronald McDonald House. While Rebecca felt relieved to have a bed to sleep in, she longed to be with her daughter. Three weeks later, Barbriannia was able to come home. After being on very strong medication, her frail body was wracked with withdrawal symptoms. Rebecca prayed for strength - and answers. A multitude of doctor's visits had yielded none.
Slowly, she recovered. Barbriannia returned to school for partial days in November, building up to full days in December. In February, she was permitted to participate in gym class again, with the proper precautions.
"When Barbriannia goes outside to the store, grandma's house, school, anywhere, she has to wear an ear loop mask to prevent catching anything, for when (she) gets sick, (she) gets weak and she can go into cardiac arrest," Rebecca explained.
During the winter, Barbriannia began to have seizure-like occurrences. After a referral to a neurologist and many tests, they discovered Barbriannia had Arnold Chiari, "which (is) a malformation of the brain where the cerebrum protrudes into the opening at the base of her skull," according to Rebecca. A neurosurgeon found that 3.5 inches of her cerebrum is in her spinal canal, which causes headaches, fatigue, difficulty swallowing, muscle weakness and possible paralysis. Two percent of known Arnold Chiari cases cause cardiac arrest. The affliction also causes her oxygen levels to drop to 45 percent when she sleeps.
In order to help Barbriannia breathe, she needs a maxillary expansion appliance, which isn't covered by insurance. Angel Doner, Rebecca's close friend of 25 years, has organized a spaghetti dinner benefit for Barbriannia to be held Saturday from 4 to 8 p.m. at the Masonic Lodge in Fredonia.
"I have no children of my own, however, I have a niece who is also 6 years (old)," Doner said. "I can't imagine what it would be like for parents or family to have to watch their child go through so much agony and be told that she could be here today and gone tomorrow. My heart aches for Barbriannia, Rebecca and their entire family."
The benefit includes a Chinese auction, a 50/50 raffle, and, contributed by Wal-Mart, raffles for a girls' 16-inch bike, a boys' 18-inch bike and a grill. Included in the dinner is a small side salad, roll and dessert. Pre-sale tickets are $7 for adults and $3 for children 10 and under. At the door, the tickets are $1 more.
Barbriannia will be having her first surgery on Monday to work her way up to brain surgery, thinning the muscles around her airway. Another stay in the ICU at the Children's Hospital will follow.
"As of right now, she can't do anything physical," Rebecca said. "She likes hockey, football, and playing outside and dolls with her sisters. She asked me the other day when she could play hockey, and it broke my heart."
It was hard for Rebecca to hold back the tears while she explained to her daughter that she will never be able to play hockey or become a cheerleader. The family is looking into other options for their daughter, trying to find activities that she can safely enjoy, such as playing miniature golf, boating or going on an easy hike.
Rebecca is forever grateful for the support of her friends and family for helping her get through this difficult experience. Doner felt that organizing the benefit was the least she could do.
"Sometimes you take people and things for granted and don't realize that life is precious, especially the life of a child," Doner said. "Barbriannia is restricted from doing what average 6-year-olds do because (of) the risk of going into cardiac arrest, which could happen at any time. Life is precious, children are precious and Barbriannia is precious, and needs and deserves our help."
For more information on the benefit, call 410-0364.
April Diodato is the OBSERVER Lifestyles editor. Send comments on this story to firstname.lastname@example.org