Today I am bringing you a guest post from our dear friends. She will tell you a bit about her son and about their fight with NF. This little guy has had an important part in our lives over the past 8 years. I think his story deserves being told. Share away and pray for a cure!
May is Neurofibromatosis (NF) Awareness Month. NF encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body. (Click here for some general NF facts & Statistics)
Our son Kohta (age 8) was diagnosed literally on his second birthday when a plexiform tumor came out on his butt cheek. That is when his pediatrician started putting it all together. His abnormally large head, his large café a lait marks, a fibroma on his chest, and the list went on.
We were given this diagnosis, written on a prescription pad and told we needed to see a Geneticist. Who? What? When? Where? WHY? We had never heard of this Neurofibromatosis thing. They must be wrong. It can’t be happening to our child. It was the true denial of any unknown diagnosis.
We struggled in the beginning. We went to Nationwide Children’s Hospital for two years until we found out that an NF Clinic was started at Cincinnati Children’s. We knew immediately our journey needed to be there for answers to all of these questions that remained unclear. Our questions were answered and a fabulous group of NF Specialized doctors gave us reassurance when we wondered what is next for our son.
Kohta has multiple medical issues. He has tumors all over his body, at this point they are all internal tumors. The external tumors usually start showing their head at puberty, of which NF kids start early. He had optic gliomas (eye tumors) which after 6 years are now resolved! This is rarely heard of in the NF world we are told so we will count our blessings! His latest diagnosis is Mild Scoliosis which means more visits to the Geneticist and scoliosis xrays at least every six months. Kohta also has Celiac disease and follows a Gluten Free diet (another genetic condition that shares awareness month in May)
Public school was a challenge at first. I am my son’s best advocate so I made sure everyone knew I was involved. Kindergarten was a disaster where I finally asked the district special needs department what is our next step. They placed Kohta in a different school which has been the most uplifting experience we could have asked for with his schooling. He has an IEP with multiple areas of needs (which is common for kids with NF who typically have learning disabilities) but he has been fortunate with a staff who wants to make sure he succeeds. He was even named Student of the Month for the second time!
In April, we attended the NF Forum in Nashville, TN. This was a grand adventure as it allowed us to meet families face to face, dealing with our same issues. It also allowed me to meet many moms who I “talk” to on Facebook and give them a hug like no one could imagine.
This brings us to May and NF Awareness Month. Kohta is the Featured NF Hero on the Children’s Tumor Foundation website. He has wanted this for a long time then to be chosen during May was his wildest dream!
I have always said “God doesn’t give me more than I can handle”. I am a true believer of that statement. Kohta was chosen as our gift from God and we will fight for him until the end. We always count our blessings, there are so many other families that have greater needs than our own at this point.
Thanks to Melanie for allowing me to be her guest blogger. The Somnitz family has been with us through most of this journey as our families connected many years ago at the YMCA. Kohta and Eph have been friends since the beginning. She knows that this is a true passion of mine and my goal to help find a cure!
Find out more about the Children’s Tumor Foundation and how you can help by visiting their website or Facebook page!
Thank you for the awareness