Mother-daughter a special bond

By Myra Miller
myra.miller@eunicetoday.com

A mother and daughter share a special bond from birth...to growing pains...to sometimes the difficult and challenging teenage years .. .and then to adulthood.
A mother and daughter sometimes develop a closeness as best friends, through good times and bad times. This is certainly the case for Beth Conner Reed, 29, and her mother Cindy Conner, as Beth’s uncertain future unfolds.
Beth was diagnosed eight years ago with NF2 (Neurofibromastosis type 2), a rare genetic condition that affects the brain and spine.
NF2 is a genetic condition affecting the NF2 gene which lacks the tumor suppressor protein, so tumors grow out of control, and can and do occur on any nerve in the body. “Half of all NF2 patients have no family history, which is the case for me,” Reed said.
May is NF Awareness Month, however the 22nd was chosen as the specific day because the NF2 gene is located on chromosome 22, and is where the mutation occurs.
According to Reed, “Currently there is no cure for NF2, and surgical removal of tumors is widely used as the main approach. However, due to the fragile locations of most NF2 tumors (brain and spine), the risks are much higher and sometimes lead to devastating results.
“The average age of onset of NF2 is 18 to 24 years; I was about to turn 21. Although these tumors are not malignant, their anatomical location and multiplicity lead to great morbidity and early mortality.”
Reed lives with NF2 everyday.
“On July 2006, my family received the news that I had NF2; I had two large tumors on the bilateral hearing nerves in my brain, which is the hallmark of NF2.
“The flow of the fluid in my brain was blocked because of the size of the tumors and caused severe headaches along with nausea and vomiting. For several months prior to my diagnosis my hearing began to deteriorate and I was having balance problems.”
Due to the rarity of NF2, the Conner family had to search out doctors to care for Beth. “There literally were no doctors in Louisiana who could adequately care for me due to the rarity of NF2, along with the fact that treatment requires a multi-disciplinary approach with many specialists involved.”
According to a 2010 study, the incidence of NF2 was 1 in 33,000 - 40,000. Reed added, “In 1987, when I was only three years old, NF2 was distinguished from NF1, a less-rare disease.
Reed and her family finally found a specialist and were told to “go home and learn sign language”. She added, “I had a ventral-peritoneal shunt placed to help allow the fluid to drain correctly from the brain, but I had worse problems ...I lost my hearing completely. The tumors were released to compress the brainstem. As the tumors began to compress, all bodily functions began to shut down. I could not walk, lost bladder and bowel control, became bed-ridden, even lost ability to swallow and a feeding tube had to be inserted.”
Reed became a patient in hospitals and rehabilitation centers over the next year, waiting for inexperienced doctors to decide on how to treat her. “I desperately needed the tumors removed, and as we waited, pressure on the nerves from the brain tumors were causing irreversible damage.”
During all the turmoil her family frantically started searching the internet for more information on NF2. Reed added, “They even made contact with a family in Virginia with three NF2 family members. The information was devastating, but would prove to be valuable over time. We were informed then that ‘normal’ would no longer be normal and many changes were coming.”
An answer and change did come for Reed. “Only by intervention from God did we connect with House Ear Institute in Los Angeles, Calif, the world leader in the treatment of NF2 brain tumors and preservation of hearing.”
Over the period of two years Reed had several tumors removed, including ankle and chest tumors. She added, “NF2 patients can develop tumors on any nerve in the body. These tumors have to be completely removed, along with the nerve portion involved, or they will continue to grow and cause problems. I continue to have a tumor on the right 8th cranial nerve, which will have to be dealt with for the third time in the near future.”
According to Reed, “In these past eight years, I have only met two people from Lousiana with NF2.”
Beth’s mother Cindy has always been amazed by her daughter, “Beth is an amazing person, and having watched and witnessed this devastating disease steal so much from her, I have never witnessed fear in her. The unknowns and the heart-wrenching pain she endures as changes take place in her body tears me up. However, Beth takes everything one day at a time and remains upbeat, and positive.”
Neither Reed’s mother, father John, or younger sisters, Aimee and Lindsay, have NF2 history.
Reed lives with her parents but is awaiting a move to Lafayette where she is looking forward to meeting other deaf and handicapped people. Her mother said, “She is very excited to remain independent.”
Reed loves crocheting, spending time with Sofie, her six year-old white German Shepherd mix, and her family, reading, watching movies and cooking. She also loves to shop.
Reed is a 2002 Eunice High School graduated and had completed her first year of RN study at LSU Eunice when she was diagnosed. She had to resign as she was confined to a hospital bed.
Her mother said, “Beth will always face the need for surgeries. She has to have MRI of brain and spine frequently to assess tumors. She experiences physical pain from the tumors in her spine, but never gives up. Her motto is..What doesn’t kill me will only make me stronger.”
She added, “Watching my child during this time was the hardest thing I have ever experienced. But God is faithful, and Beth is a miracle today.”
To learn and read more about NF2: advocurenf2.org