We welcomed our daughter, Erica Bailey Booker on December 2, 1998. She was a beautiful little pink bundle of joy. We immediately fell in love with her. As we told everyone from the moment we saw her, "You think you love a lot of things, but as a parent, you hold that new born baby in your arms...it is a love you have never felt before". It is a love that is so connected and so wonderful!
Erica seemed to be growing and developing just fine overall. We were doing the things and activities a family normally does. Life was great! Then on July 4, 2000 at 20-months-old, she had her first bout with what we later found out was Multiple Sclerosis. She could not move her head, and the doctors at Moses Cone Hospital Emergency Department thought it was Viral Meningitis. After a few days in the hospital, she was better. Then a couple of months later, while we were in Ohio, her right arm became sluggish, and she gradually was becoming unable to use it. We took her to my long-time, best friend's pediatrician, and she sent us immediately to Akron Children's Hospital. They thought it was ADEM (acute disseminated encephalomyelitis), a neurological disorder of the central nervous system in which focal demyelination is present throughout the brain and spinal cord. After some medication she recovered quickly that time, too. Approximately two months later, she started having trouble walking, and we took her to Wake Forest University Baptist Hospital Emergency Department where she then came under the care of Pediatric Neurology and was admitted to Brenner's Children's Hospital. For almost a year, we and the doctors still thought her situation was ADEM, a viral type disease that eventually goes away. Erica ultimately had to be seen by a senior adult Multiple Sclerosis Neurologist at WFU Baptist Hospital, who immediately determined from her MRI scans that she had MS. We could not believe it. At that time, the diagnosis was still very hopeful, but as time went by, everything we tried would only work for a short while.
Even though the MS started off with intermittent bouts, as months and years went by, the bouts were closer together. She had a particularly aggressive form of the disease. She struggled with numerous issues including left and right side paralysis and optic neuritis, in which her eyesight would come and go; she ultimately lost ninety percent of her eyesight. A few times, her speech was affected, she would get tired quickly, she had bouts of pain, bowel and bladder problems and sleep problems. She also had problems sitting up, standing and walking. We made countless trips to the emergency department whether it was by car or ambulance.
Over the four years that Erica had Multiple Sclerosis, we searched for answers at numerous hospitals including Akron Children's Hospital, Moses Cone, UNC Chapel Hill, Wake Forest-Baptist Hospital/Brenner's Children's Hospital (to see the pediatric neurologists, an adult MS neurologist and an ophthalmologist), University of Virginia along with a local pediatric neurologist and ophthalmologist. We consulted with a doctor in St. Louis and also with doctors from a newly formed Pediatric MS Clinic in New York. Erica routinely took physical therapy at Moses Cone Re-Hab Center. Many of the nurses, staff and CNA's at WFU Baptist/Brenner’s Children’s Hospital became very close to Erica and our family and we will never forget them.
We started with the traditional hard core MS drugs that included daily injections. She always had to have steroids by I.V. after having a bout of paralysis. Later there were some newly approved drugs added, too. Our Neurologist also tried chemotherapy on an experimental basis and Erica had to have surgery to place a port-a-cath for all medication she needed. The doctors also tried a process called aphaeresis, which is similar to dialysis and having a transfusion at the same time, but with the ports placed in the neck area. These were lengthy processes that required her to stay in the hospitals weeks at a time. There were endless varieties of tests done including over twenty lower lumbar punctures and over forty MRIs. She even underwent a brain biopsy at one point to further analyze her problem. At times, the drugs and various things the doctors tried would appear to be working, but then, as our hopes would be up, Erica would have another bout of MS, each time a little stronger and more damaging than the last.
For many years, hospitals became a way of life for Erica and our family until she passed on July 9, 2004 at 5 ½ years of age. Multiple sclerosis had eventually taken her eyesight, stamina, physical strength and her ability to move her arms, legs and body. She eventually had to start using a walker and then progressed to a wheelchair. One thing that was never taken away was her spirit. When she felt up to it, Erica could be seen smiling and laughing. She had a great sense of humor and such an unusually sweet, loving way about her.
Erica's bravery and positive outlook were astounding. One example is the time she was trying her best to walk down the hallway and into our bedroom. She was concentrating so hard on trying to put one foot in front of the other, learning to walk all over again as she was forced to do many times, that she didn't notice that she was being watched. What we observed was Erica repeating to herself, aloud with each step she took, "I can do it, I can do it." Erica was an inspiration to all and permanently touched and changed many lives. Friends and family still to this day tell us that, right when they think their life is tough, they think of Erica and suddenly their "problems" become minor in the big scope of life.
One of Erica's many neurologists unknowingly coined the name "Team Erica" due to the fact that a large group of family, friends and others always rallied together whether it was at home or in the hospital to take care of Erica's needs. Along with us and Erica's little brother, those caring people included our families in town and out of state, our Oak Ridge Presbyterian Church family, close friends from all over, her caring and dedicated at-home CNA nurse, the incredible nurses from Hospice and Kid's Path, a wonderful teacher from the School of the Blind, her sweet and helpful physical therapist, the thoughtful retired teacher from our church who would teach Erica over the summer time, and her supportive MS Lifelink partner. This was the origination and reason for the name Team Erica.
We officially started Team Erica in 2003, one year before Erica's passing. In 1990, we had both rode in the MS Tour to Tanglewood, before we had children. Ronald has ridden in the tour several times thereafter. When our daughter was diagnosed with MS, we knew we had to get back in the MS tour full force and help raise money to cure this devastating disease. Team Erica officially started with nine members and grew to 155 team members in 2011, becoming the largest team in the tour and raising $101,976. We will continue to promote the team and bring awareness to the cause, raising money to support finding a cure for Multiple Sclerosis.
We genuinely want to thank everyone who has been by our side from the beginning and those who are joining in to honor the memory of our sweet and courageous daughter, Erica, supporting our family, supporting Team Erica and the MS Society. We thank everyone from the very deepest depths of our hearts.
God bless all of you.
The Booker Family