|
|
Within the realm of what NF can do to a child, we are so fortunate that Julia's case has been mild. However even a mild case of NF affects our daily life. Julia suffers from migraine headaches that at times make her sick and Julia's nerves signal out of control causing her to itch herself until shes red and scratched. Julia has behavior, learning and speech issues, all caused by this neurological disorder that changes every cell in your body. NF also causes Julia to have frequent stomach aches, NF is associated with pain, although researchers aren't sure why. Although we make every effort to live a normal life and give all four of our children the innocence childhood is supposed to have, the truth is our daily life is only as good as Julia is doing- If we are waiting for MRI results or Julia hasn't been feeling well, or something comes up at a doctor appointment, our lives revolve around NF and helpless isn't even a good enough word to describe that feeling. The carefree childhood we were fortunate enough to have experienced has been taken from our child. On the days when Julia's not feeling well the anxiety is overwhelming and it takes all our energy to make it through until the next day when we see if Julia feels better. Julia has become so used to being a patient she never complains when she can't eat for 15 hours because of an MRI or throws up for hours after, she holds so still during bloodwork no one needs to hold her. Her strength amazes and comforts us, because we know she will need to continue to be a strong girl. Our brave, beautiful Julia turned 8 this August. All birthdays are miracles, and every birthday Julia has where she is free of medical treatments is truly a gift of a time. Puberty is quickly approaching and is a time when NF accelerates. To date our team has raised 140 thousand dollars. Drug trails cost 12 to 25 thousand dollars- our team has raised enough to fund at least 4 drugs to be tried for NF a disorder that has no treatments, yet. We are determined to change the quality of Julias life, we are dedicated to The Childrens Tumor Foundation- which is helping us do that.
|
Four years ago our life changed drastically when our beautiful ladybug girl was diagnosed with NF. Julia was just a tiny girl, about to turn 4 years old. The facts of NF- its progressive, unpredictable, affects each individual differently, has no cure or treatments, causes tumors to grow throughout and on the body- left us feeling helpess, shocked and with a cloud of grief that has yet to pass. After some time passed, our brains tried to digest these facts, our family tried to help us cope while grieving themselves and when we went public- you- our community, our friends, our co-workers surrounded us with support we are forever grateful for and couldn't do without.
