Lynzee C. - Quilt Finished in 2007

Born: February 7, 1992

Illness: Neurofibromatosis, Asthma, Scoliosis, Seizures

Lynzee's Story

Written by Lynzee's mom Dorothy in May 2006

Lynzee was born on February, 7 1992.  She weighed 6lbs and was 18in long.  I noticed that Lynzee had a big brown birth mark on her at this time.  I brought it to the Doctors attention due to myself having a disease called Neurofibromatosis (NF).  I was told that I was being paranoid because I was a new mom.  When Lynzee came home from the hospital at two days old she began to have severe reflux.  At two weeks old she was admitted to the hospital.  This would be her first of 22 within the first year of her life and a total of at least 60.  She was diagnosed with reflux and NF.  She had surgery called a nissen with a g-tube and a pyloroplasty plus ear tubes.  At 7 she was diagnosed with Asthma.  At 8 scoliosis and in March of 2006 she started having seizures and in June Chemo.

NF is a disease that causes tumors to grow any where on the inside or outside of the body.  Tumors, pain, scoliosis, plexifrom tumors, learning problems, seizures, bone abnormalities, large heads... some tumors that can become cancer are just a few thing that can happen with this disease.  There is no cure and could shorten life expectancy by 15 years.

Lynzee is starting Gleevec on June 1, 2006 (oral chemo medicine) because she has tumors on her spine called plexiforms and in her hip area they cause her a lot of pain. She also has to wear a back brace due to scoliosis, and is on seizure and asthma medicines.  She makes trips to the doctors 2-4 monthly now that chemo started before that it was 1-2 times every 3-4 months.  She has countless MRI's, blood draws, visits to a lot of different doctors.

Despite all that she remains with a smile that brightening up a room, and is willing to try to help others.  She is the bravest person I know that doesn't complain.