ROYAL HIGHLANDS — Needed: An operable vehicle for medical trips. For as little as six months, unfortunately.
Four-year-old Jenifer Moshier is dying from Alpers' disease, a degenerative genetic disease that eats away at the brain. Doctors at St. Joseph's Hospital in Tampa have given her as little as six months to live.
Jenifer requires frequent trips to physicians from Spring Hill to Pasco County to Tampa, said her mother, Susan Moshier, 23, a Hernando County native.
In an extended family of six people spanning three generations living in a double-wide mobile home, there is one vehicle. Grandmother Diane Bartlett, 49, needs it to get to her job as a food service worker at D.S. Parrott Middle School in Brooksville.
When a medical appointment is necessary — to check on Jenifer's deteriorating brain function, her all-but-gone motor skills, her feeding tube and to monitor her seizures — Moshier must take her mother to work and then return from her trips in time to fetch her home.
Compounding the problem are medical appointments for Jenifer's 1-year-old sister, Nevea Coats, who has severe hearing loss in both ears. She visits an audiologist in Tampa monthly, attends therapy in Spring Hill weekly and goes to a pediatrician biweekly.
Also, Jenifer's grandfather, Charles Bartlett, 50, is facing surgery for removal of lymph nodes in his neck. He has been unable to work at his job as a swimming pool refinisher. Susan's brother, Travis, 19, lives in the home as well.
All of the medical problems makes for stressful scheduling and worries about transportation. A second vehicle, preferably donated, would greatly ease the family's hardships.
Of greatest concern to the family is Jenifer's condition. The little girl can no longer talk, walk, sit up without restraints or eat by mouth. She spends her time in a wheelchair, in bed or on a quilt on the floor. She eats through a feeding tube, said Moshier.
The condition was first evidenced by the little girl's seizures that began last August. At All Children's Hospital in St. Petersburg, doctors diagnosed a brain deformity called chaira, a malformation in which the brain stem has descended into the base of the neck, with ultimate restriction of fluid flow into her brain.
Surgeons, said Moshier, shaved away part of Jenifer's spinal cord and brain matter that extended into her neck. The procedure in October halted the seizures, but Jenifer didn't regain any brain and motor functions, her mother lamented.
Through an MRI and EKG after the youngster was transferred in February to St. Joseph's, the youngster's brain was found to have shrunk a half-inch within five months.
"When your brain shrinks, that's Alpers'," said Moshier. "It only affects children between the ages of 2 and 3. There's no cure for it and no way to slow the process. Her brain is still shrinking. It will cause her entire system to shut down."
Medicaid covers the health care for the children. Jenifer's father, divorced from Susan Moshier, pays $54 a week in child support. Nevea's father can't be located.
Grandmother Bartlett's modest earnings help buy diapers. Moshier had to quit her part-time job as a custodian at Nature Coast High School to care for Jenifer.
"Real sad," says Mary Scarff, director of Christmas Angels, who re-connected with the family last Christmas when they arrived at a community supported give-away seeking toys for the little girls. Scarff and Bartlett go way back, when both were fostering children. Diane and Charles Bartlett adopted Susan Moshier, another girl and Travis.
"She's not one of these welfare mothers waiting for the checks to come in,'' Scarff said of Moshier. "There are no checks. The family is financially tapped out."
Hernando Pasco Hospice is visiting the household for a couple of hours five days a week, said Moshier. The hospice provides a weekend hotline, but Moshier maintains she's the only one capable of caring for Jenifer in a mother's mode.
Moshier, resigned to the situation, states her daughters' cases in a moderate voice. Grandmother Bartlett sobs in the background.
While a vehicle to attend medical appoints is an immediate need, Moshier added stoically, "The cost of a funeral and arrangements is another thing we'll need for Jenifer."
To help, contact Moshier at 596-4132.
Beth Gray can be contacted at firstname.lastname@example.org.