Baylee Ruth June Laughlan, 3, of Niagara County
Little Bay brings oodles of love and laughter to everyone around her. Her parents, Kelly and Mike, can’t wait to start the journey of being a Satellite Celebrity Family with the Variety Club Telethon and share Bay’s story with all of you! Here’s an overview of Bay’s life and experience, in the words of her parents:
Baylee Ruth June Laughlan was born on August 13th, 2014. At birth, we noticed a large birthmark on Baylee’s side. When we asked the Pediatrician about it, we were told that some children were born with excessive pigment and not to stress. As Bay continued to grow, she was late to hit some major milestones. We were blessed to be introduced to the Niagara County Early Intervention team who came to the house to evaluate Baylee. It was one of the therapists who noticed Baylee’s birthmarks along with her developmental delays and large head size and suggesgted that we discuss the possibility of Neurofibromatosis with our Pediatrician. After voicing our concerns at Bay’s next appointment, we were told that meeting with a Genetics doctor would be the next step. It was then that our journey with Women’s and Children’s Hospital of Buffalo began.
Shortly before Baylee’s second birthday, we were introduced to Dr. Sadler with the Genetics Department at Women’s and Children’s Hospital who was able to confirm Baylee’s diagnosis of Neurofibromatosis (NF1) just by performing a physical exam on her. Neurofibromatosis is a genetic disorder which occurs in 1 out of every 3000 births. A few of the symptoms of the disorder are tumor growth around nerves and on the skin, café au lait (light brown) birthmarks, developmental delays, enlarged head size, scoliosis, and fibromas (small benign skin growths) to form. Each case of Neurofibromatosis is different, some more severe than others. In order to see if Baylee had any tumors forming, Dr. Sadler ordered a MRI of the brain and orbits. Bay had her first MRI at Women’s and Children’s Hospital in August of 2015. We were so thankful to have Women’s and Children’s Hospital available to us during this confusing and worrisome time. Because of her age, we had to have Baylee sedated for the MRI and it was so comforting to know we had the caring and supportive staff of Women’s and Children’s Hospital taking care of our Child. Dr. Sadler called us the following morning to let us know there was indeed an Optic Glioma (tumor) behind Baylee’s right eye which we would need to monitor.
While all of this was going on, we were also introduced to the Robert Warner, MD Center for Children with Special Needs within Women’s and Children’s Hospital of Buffalo. We saw a developmental pediatrician there who monitored Baylee’s developmental growth and offered any additional suggestions that might be helpful to us when handling Baylee’s developmental delays. Bay was already receiving Special Education, OT, PT, Speech through Early Intervention and we added on Vision and Orientation & Mobility therapy once the tumor was found and it was determined that her vision could be affected going forward. They advised that we had a good handle on all of Bay’s therapies and they continue to see her and monitor her growth and development as she continues to learn and grow.
As we continue our NF1 journey with Baylee, we have also been blessed in that Women’s and Children’s Hospital of Buffalo has decided to open a clinic dedicated to Neurofibromatosis. The closest one prior to this was in Rochester, and when we had contacted them about seeing Baylee there was a year wait to get in. On June 1st of this year, we saw Dr. Li in Neurosurgery as part of the clinic. He examined Baylee and listened to our concerns about this uncertain disorder. He ordered her latest MRI which included her brain, orbits and spine to examine her further for tumors and monitor the existing tumor behind her eye. We also saw Dr. Fitzpatrick in Oncology as part of the clinic to discuss any other medical questions we may have and discuss any other questions/concerns we may have had. She had attended the World NF Conference and was so compassionate when speaking with us about this disorder and how it might affect Baylee going forward. It is such a relief to have these amazing Doctors and this Clinic available to us right here in Buffalo at the Hospital!
Baylee’s latest MRI was done last month on August 29th at Women’s and Children’s Hospital. We were thrilled when we met with Dr. Li to review the results and he advised that Baylee’s tumor behind her right eye has shrunk down approximately 2 millimeters (without treatment) and there were no new growths of any kind! Dr Li. then ordered a follow-up MRI in six months to continue monitoring. Eventually we are hoping that her scans will be able to move to once a year as long as we continue down the road of no new growth and her existing tumor remains stable.
Throughout the many tests, appointments and therapies that she has had to endure, Baylee continues to be such a light in our lives and those around her. She has come so far and continues to amaze us with all that she accomplishes while dealing with her developmental delays and the vision impairment from her tumor. She completed the Early Intervention process as of August and is currently attending a special needs pre-school in a full day program! She teaches us strength, resiliency and courage everyday! We look forward to seeing what the future has to hold for Baylee! We can’t thank Women’s and Children’s Hospital enough for all that they have done to help us navigate through this Neurofibromatosis (NF1) journey with Baylee and are so grateful to be involved with the Variety Club Telethon this year to help bring awareness and funds to the amazing facility which has helped our Family in such a tremendous way!