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When you are a little girl you often dream of getting married and having children. In that dream everything always turns out perfect…you have the number of children that you want, if you want 3 girls and a boy, that is exactly what you have. But as you grow up you learn that you still have a perfect dream, however, sometimes the circumstances in which you reach that dream level is a little different from what you imagined.
When Darrick and I talked about children we often talked about 3 kids. He wanted two boys and a girl, I on the other hand said if we have a boy and a girl I would be okay. We got the girl on the first try, and a couple of years later we were blessed with identical twin boys. However, one was born with complications and only lived for a little shy of 2 months. Again, we achieved our dream but the circumstances were a little different from we planned. The twin that passed, passed away from heart complications and congenital diaphragmatic hernia. When he was born we had never heard of this sickness, however, since things moved so quickly we had to learn on the go.
Learning on the Go is never easy! In my own experience when you aren’t educated ahead of time you automatically think the worse, and when you start researching you tend to find out the hardest information first without finding the positives in the situation.
As a parent that has had two children that have had to spend time in the hospital I understand how hard it can be to have a child that is sick, and not understand fully the whole situation. Often times you rely on loved ones to be your strength during this time and you cling to them for day-to-day strength.
I am VERY familiar with those walks in the hospital that seem like the hallway is never-ending and you are replaying EVERYTHING in your mind that the doctors have gone over with you and thinking how did I get to this point. Why wasn’t I educated on everything right away instead of learning on the go.
So with that being said we are now in May! And…
May is Neurofibromatosis (NF) Awareness Month!
What better time to help educate and spread awareness!
Im always here to help my fellow parents out…
Neurofibromatosis is a set of genetic disorders that causes tumors to grow along various types of nerves. It can also affect development of non-nervous tissues such as bones and skin, and cause tumors to grow anywhere on or in the body.
The genetic disorder is classified into three distinct types: NF1, NF2 and Schwannomatosis.
“Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.
Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.
Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.
The genetics of NF1 and NF2 are outlined below. Unlike NF1 and NF2, the inheritance patterns of Schwannomatosis are not understood due largely to lack of cases to study. However it is estimated that 85% of cases are in fact sporadic (no previous family history) and 15% are inherited. (Info)”
The Children’s Tumor Foundation is a not-for-profit organization that is dedicated to the critical research of neurofibromatosis, and finding an effective treatment for the millions of people living with this disorder. Along with the research The Children’s Tumor Foundation is conducting, they are also finding new research and bringing attention to several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community.
The Foundation’s “I Know a Fighter” campaign is an opportunity to recognize the many ways the community pushes back against neurofibromatosis – scientists researching treatments and a cure; the volunteers driving awareness in the community; the donors raising money to fund research; and the family supporting one another at every doctor appointment and test.
Now, I dont know anyone personally who has neurofibromatosis…but I do know the importance of being a “fighter” for your child (even if you are “Learning On The Go…make sure you remain that FIGHTER for your child)!
This is how I fight: I RUN, TREAT, RACE, WALK, VOLUNTEER, SHARE, STUDY, LOBBY, etc.
How do you Fight???
Interested in more ways to connect to The Children’s Tumor Foundation…
Also, if you are looking to attend an Event sponsored by The Children’s Tumor Foundation…Check Out the Calendar of Events rel=”nofollow.”
