Make A Child Smile

Lynzee's Story
written by mom Dorothy

When I found out that I was going to have a baby I was so excited and my pregnancy and labor was as normal as you can get.

Lynzee was born on February 7th, 1992. Although Lynzee was 4 weeks early when she was born, she was 6lbs 0oz and was 18in long. She appeared to be a perfectly normal baby until she was 4 days old.

Lynzee had a huge brown spot known as "café-au-lait" or Cal spots, that covered her whole belly around her back and down one leg. At first this didn't bother her doctors much, but I kept insisting that Lynzee had a condition called Neurofibromatosis because, I myself have NF, and if a parent has NF then their child has a 50/50 chance of getting this disorder. After several months of complaining to her doctors about her sickness and more cal spots, it was decided that Lynzee should go see a Neurology doctor. At this first visit, we were told she indeed had Neurofibromatosis (NF).

NF is a condition that affects 1 in 3,500 births, either through a mutation or by a parent already having it. NF causes tumors to grow anywhere on the inside or outside of the body, learning disabilities, poor growth, can cause cancer, bone malformation, lots of pain and more brown spots. NF patients also have a shorter life expectancy of 15 years compared to healthy people. The severity of NF varies from person to person. There is no cure for Neurofibromatosis, only treatment for some of the aspects of this disorder.

At a year old, Lynzee was diagnosed with severe reflux and failure to thrive. Lynzee could not gain weight or grow in length, at this point, she had numerous hospital stays from 2 weeks old until she was 1 year old. This caused her to have surgery for reflux, a G-tube was placed and she had a Nissen Fundoplication (operation to sew the top of the stomach (fundus) around the esophagus) and a Pyeloplasty (surgical reconstruction of the renal pelvis to drain and decompress the kidney) done at this time. After her surgery she still had countless hospital stays until she was 2 years old. It was decided at this time, to remove the G-Tube and let nature take its course. Lynzee sees her doctors every 3 to 6 months and has lots a MRI's and X-Rays done. She still has countless Cal marks all over her body.

Lynzee was diagnosed with Asthma in January of 2000 and is taking medication for her Asthma. In March of 2006, she was diagnosed with Partial Complex Seizures and started taking seizure medication.

Lynzee has scoliosis and wears a brace 23 hours a day. This hurts her badly due to her also having what is called Plexiform tumors on her spine and by her bottom area. These tumors started growing in December of 2005, this is when she was sent to an Oncologist and was started on a oral form of chemotherapy in hopes of stopping the growth and possibly shrinking the tumors.

Lynzee completed 25 months of chemo ending in May 2008. She has had some slight tumor growth in her hip area and some new bumps that have come up around her spine. We have found out that she will differently restart on an oral chemo by the end of October 2008, we are pending insurance approval and approval from the drug company because it will be a clinical trial. Lynzee also had to start on another pain medication for daily use and has to have PT for her weak muscles. She is now on 2 different seizures medications as well.

In June of 2008, Lynzee had some psychological tests done and we were told that she ranged in the Mildly Handicapped range and would need extra support in school.

While going back and forth to NIH (National Institute of Health) we have also learned that she needs to have follow up for Myotonic Muscular Dystrophy due to her weakness, feeding issues and family history.

Despite all her health issues Lynzee remains positive and is always ready to make someone smile. She is truly a gift and inspiration to not only me but others that she meets.

(Story and Interests were last updated October, 2008)