Cecile Playing Badminton - 30" x 24" Oil on Canvas
Cecile Hernandez Pesayco from the Philippines was was born with a lot of cafe au lait spots on her skin. As a child, she was very active and loved playing and running around. Sometimes she experienced severe headaches that made her stop what she loved to do. When Cecile was 13 years old she noticed lumps starting to grow on her skin. As she got older, the lumps started to grow in large numbers. She doesn't have NF only on her skin but under her skin as well. The tumors under her skin got bigger and started pressing some nerves which makes living with NF painful. Doctors said the tumors have to be removed. She has already had 8 operations to removed those specific tumors. Some of them turned out to be malignant and needed some radiation. None of that stopped Cecile from living a normal life and from doing the things that she wants to do.
As Cecile looked for answers to what Neurofibromatosis(NF) really was, she found not just an answer, but a friend, Kcat Yarza. She also has NF and together they formed the group NF Friends Philippines which has over 100 members including parents of children with NF. They try to support each other by focusing on the blessings that they receive each day and hope to raise awareness about the disorder. Despite the nerve damage NF has caused, Cecile loves playing badminton and she plays it almost everyday!
Nichole Servos was diagnosed with NF at the age of 8 due to having a few skin tumors that required medical attention. Her parents had never heard of NF before she was diagnosed (no other family member has NF) and thus was told by the family doctor at the time it was a non-threatening/non-life changing disorder.
Nichole’s childhood years were lived as any other normal childhood, with NF never in the forefront of her mind or those of her parents. At the age of 16, Nichole’s world drastically changed when, while recovering from a severe case of pneumonia, she lost hearing in the left ear. After a battery of tests it was discovered that she had several brain tumors (acoustic neuromas which resulted in a diagnosis and confirmation of NF2), one which had already claimed its prize and would need to be removed, and another needing action to keep it from staking its own claim to the hearing on her right side. By the time Nichole reached the age of 18, NF had created a new chapter in her life, leaving her completely Deaf to sound and looking for ways to fit into both the hearing and Deaf worlds. Despite the toll NF had taken, she continued to lead a fulfilling life, graduating high school, attending college, living on her own and eventually marrying her high school sweetheart.
For 13 years, NF spared Nichole and laid “dormant” until it threw another curveball shortly after her 30th birthday. She began to have facial weakness on the left side. The cause was the brain tumor which had already been removed after it staked its claim on her hearing; it had come back for more and now claimed one side of her face along with another tumor on the opposite side waiting in the wings to take the right side of her face. Needless to say, NF brought a rash of procedures and hospitalizations, 6 brain surgeries within an 18-month time span, and left her literally expressionless. Among her many procedures, she has since received is an ABI (Auditory Brainstem Implant) which helps her “hear” sounds again, and Facial Reanimation surgery which has restored part of her facial functions. NF hasn’t stopped there. Its latest claim has been that of her spine with several tumors on/in the spinal column which have needed removal, required rehab and left her with a little hitch in her step. Despite all the roadblocks of life, Nichole keeps a positive outlook due to the outpouring of love and support from all her family and friends, as well as her strong faith.
NF has claimed the sound from her life, put a hitch in her step, and has taken the true smile from Nichole’s face, but it will never take the smile from her heart as it looks to the future in hopes that one day a cure can be found for her and others like her who live with NF. That is why Nichole has become actively involved with the national Neurofibromatosis Network. She also currently serves as the President of the NF Central Plains chapter, participates and supports the NF advocacy program, and for the last 10 years, has helped raise more than $30,000 for the NF Network. She is happily married and resides in a small town in Southeast Kansas.