We were awakened by the sound of our 15-year-old daughter’s babbling. It was very early in the morning after Mother’s Day, the Monday of finals week for a child with a 4.0 average in an honor’s level program at her High School . Penelope had already overcome so much in her young life, being born a 27 week preemie. Two months in a NICU saw countless ups and downs including a serious Strep infection, bleeding in her brain resulting in hydrocephalus and lifesaving brain surgery to install a shunt. All of that resulted in Cerebral Palsy, a condition affecting her ability to control basic body functions and leaving her to grow up in a wheelchair.
Through years of multiple brain surgeries for her shunt, speech, physical and occupational therapy, wheelchair clinics, adaptive equipment along with her God given cognitive abilities, Penny has learned to function at an extremely high level. She is a member of her school’s journalism club, writes for the Magazine and Yearbook. She is witty, funny and well-liked by all the know her and aspires to be a sports writer when she grows up.
However, at two o’clock that morning she was anything but. Our first thought was that she had a mental breakdown because of the pressure of finals. When the babbling didn’t cease we brought Penny to the ER at All Children’s Hospital in ST Petersburg, FL. Nothing serious was detected there and while she was sent home she was finally admitted to the hospital when the only interruption to her condition came during her brief periods of sleep. She went through testing that included countless blood draws, two more MRI’s, a CT scan, x-rays, EEG, and finally a tap of her shunt to send some cerebral fluid to the lab. During that week, Penelope was visited by 19 doctors trying to determine what was causing her delirium each sure that it was a physical ailment including the staff psychiatrist.
They suspected some sort of infection in her spinal fluid and began to treat for it. We noticed some small improvement. After two long weeks, three weeks from that first night, the results came back and it was determined that Penelope did, in fact, have a Strep infection in her cerebral fluid that was impacting the ability of her brain receptors. The treatment was refined to that diagnosis and finally Penny is beginning to resurface and make the climb up the road that lies ahead towards a full recovery.
Why this plea?
Many people would be surprised to learn that a disabled child does not receive benefits, at least not in Florida. Since we are considered a middle-class family living primarily off Kevin’s salary as the Senior Pastor of a Church, we don’t qualify for government benefits. Kersti is now a stay at home mom to take care of Penny's many needs. The fight to provide our daughter with quality care is exhausting and has taken a physical toll on both of us.
She has been on a Medicaid waiting list for over 10 years and is unlikely to qualify before she turns 18. There are monthly insurance premiums to pay, bills from a hospitalization last year and over 10K in medical expenses over and above what insurance will cover for this latest episode. God only knows how much more expense we will bear over the next three years.
We are hoping to raise $25,000 to cover past, current and future expenses in order to insure that Penelope realizes her full potential. Thank you so much and God bless!