May 25, 2003, at 10:25 a.m. Lucas was born” Right on time to celebrate the long Memorial Day weekend. His father and I couldn’t be happier. Our family of 4, 1 girl and now 1boy, is complete. No complications during pregnancy and after delivery..As a parent you worry everyday if your children are safe and healthy. So when you go to the doctors for those regular checkups, you worry what might be found. So when your doctor tells you that he detects a problem, you freeze and barely hear a word he is saying.
Neurofibromatosis, that’s when I said, what? Then I noticed all the brown spots that you think are just cute little birthmarks are really clinical signs for Neurofibromatosis. After several days of Internet searches, the doctor visits start. Neurofibromatosis is a wait and sees type of condition. This condition has such a broad spectrum of issues; you can’t know where you fall until it happens. There are 2 types of NF. NF1, which mainly affects the eyes, and NF2 that affects the ears. Lucas has NF1, meaning he has cafe au lait spots (brown spot) on his retina. This is where Lucas journey begins. As we begin to see specialists they start to notice that Lucas has other issues that need to be resolved. Lucas movements are delayed causing him to develop Torticollis. More evaluations take place and now we have 4 therapists 5 days a week. My children are my life, so my husband and I made the decision for me to stay home and help Lucas in this process. Having torticollis created not only uncomfortable therapies but also it developed another condition known as Plagiocephaly. Lucas’ head began to elongate causing a malformation of his skull. Lucas now had to wear a cranial helmet. This acts like what braces do for the teeth, allowing the head to form normally and equally. During this time we learned through his therapist that Lucas has ADHD and PDD. This will affect his educational journey and becomes a every day fight to help Lucas be his best. Now we have to deal with searching for a specialist in NF. After several recommendations and evaluations later we found a wonderful Physician. She was a calming factor in our life. Lucas responded well with her. As he got older, therapy was still needed, we started to notice the “bumps, another progression of his NF. These “bumps” (plexiforms) can form just under the skin or deeper in the nerve fibers. MRis are done to determine the degree and how invasive these tumors are. They are slow growing and usually don’t need to be removed. Unfortunately, Lucas had one developing just above his eye. This tumor caused his eye to droop and obstruct his vision. At this point we had to decide for surgery or just leave it. We had some time since these tumors are very slow growing. Finding the right doctor was the key.
Once you do this is making sure insurance pays. So we find a doctor that “claims” he specializes in ocularjplastic surgery and takes our insurance, WIN WIN. Not so much, my son lost half his eyebrow and most of the tumor remained. At this point my husband and I are devastated. We know now that finding the right doctor is the key.
Lucas is a beautiful young boy who has been through quite a lot in his young life. He is currently 12 years old and in 6th grade. He has since had 4 more surgeries to correct and remove his plexiform above his eye. Through all his battles, Lucas has triumphed and continues to grow and be the best he can. We may not know what the future will hold for Lucas, but we will continue to fight by his side and never give up in research and education for families of Neurofibromatosis.