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Click here to watch NF Hero Julia Pefetti and her family on the Today Show from Thursday, July 2!  The Foundation would like to thank the Perfetti family for all that they do to help fight the battle against neurofibromatosis.

The segment follows an email Laura, and husband Anthony, sent to the producers of Today (see below).  For more on Julia's story please visit the Team Julia Bug site here.

To Whom it May Concern,

I am writing to you because my family fights a daily battle against Neurofibromatosis or NF1 for our 6 year old daughter Julia "Ladybug". NF means that tumors grow throughout the body and can lead to learning disabilities, blindness, deafness, broken bones and cancer. NF means every cell in your body is running too fast, dividing and causing tumors to grow. NF affects 1 in every 3000 births and can happen to anyone. Anyone's next baby can be born with NF. There are no treatments and no cure for NF. It is one of the most prevalent genetic disorder. It strikes people of all races and ethnic origins worldwide and both sexes equally.

Our family has no history of NF. Julia has NF due to a spontaneous mutation. Our daughter Julia is only 6 years old and she has had more MRI's than most adults. Julia has several areas in her brain that are suspicious. They are in her brain stem. Unfortunately we will know if these areas grow or change because the brain stem is an active part of your brain in charge of many life functions. These areas act like tumors in some ways, they have mass. Julia has an MRI every 6 months to check those areas. Julia is put under general anesthesia for up to 2 hours during an MRI. She is sick for hours after. Julia has missed school, camp and play dates because of doctor appointments. Julia has had to be a brave, strong girl and she will need to stay this way to fight and win the battles that lie ahead.

NF is progressive. We know that as a person with NF grows the challenges they face increase with age and time. We don't know the rate of that progression. There are no predictors of which children will be severely affected as they age.Our ladybug is also being seen by an endocrinologist that also specializes in brain tumors. Julia hasn't grown very much in the past 2 years. NF means you can grow too little or too much. If we need to give Julia growth hormones then the hormones could promote growth of tumors. Our world is filled with so many "maybe's".

We have been working with The Children's Tumor Foundation, www.ctf.org , to raise money and awareness to cure NF. Our Team Julia Ladybug has had several fundraiser's and has raised close to thirty thousand dollars to fund the research desperately needed to find a cure or at least treatments. There are too many questions surrounding NFand so much is at stake. We are determined to change the face of NF before it has a chance to affect our baby girl. The possibilities NF has in store for our daughter no one can predict. How it will manifest itself through her life keeps us awake at night. As a parent it is very difficult to hear that your child has any special need, no matter what it may be. Living every day trying to remain positive and trying to take care of a child whose medical needs are so complicated is an exhausting, emotional roller coaster.

Children should be free to grow, play and live happy healthy lives. Parents should be able to love them, watch them grow and have the luxury of small worries. Our family swims in the ocean of the unknown. We have a child that has been placed on a path that leads to an unknown destination, one that has roadblocks we can't anticipate or plan for. We feel helpless at doctor appointments because although we are fortunate to have the best medical care there is so much about NF that nobody knows. It is difficult to know if you are making the right decision for your child when you are trying to understand what they are talking about, because NF affects every part of your body.

We are grateful everyday that Julia has avoided so many of the complications NF can bring. We are doing everything in our power to keep it that way. Thank you for anything you can do to help our daughter and so many people affected by NF. We appreciate it. We attached a picture of our family and our girl.

Thank you so much,

Laura and Anthony Perfetti

No Cure, No Cure won't stop running through our heads
unbelievable words, fill us with dread through the night, steals our sleep our hearts are heavy- filled with lead
NF means weathering all different storms,
we pray that our daughter will remain strong.
On a path God choose for us to travel, we never know which part will unravel.
And how do you tell the ones that you love?
that your counting on angels to protect her from above?
We wish we could take it all away, make it all better for our baby J.
NF has stolen or light-hearted days, because tumors can grow- this fills us with rage
This is no way for a child to live, who knew the pain that life could give.
A cure, a cure- we have to believe it's on the way, so these children can grow, live, love and play.
like a sun on the horizon, warm and bright A cure will come sooner if we join together and fight.