Wednesday, February 2, 2011

Race day party and new followers!

Saturday we went to one of  the Children's Tumor Foundation local events.
The Children's Tumor Foundation is a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).

What is Neurofibromatosis?
Neurofibromatosis encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves.  NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.

My little girl has Neurofibromatosis 1, as some of you may know.
She has no tumors. We pray everyday about that. But she has bone deformity, or pseudoarthrosis on her right leg. This means that her tibia was very week, and as she started walking the bone could not handle her weight anymore. She broke her leg two times. It was a very difficult time for us.
At  two and a half years old she had a surgery to correct her leg.
We have no NF history on our family. Brenda's condition comes from a "spontaneous mutation".
To make a long story short, she now is 6 and a half years old, and has a pretty "normal" life.
She wears a brace to protect her leg, and has some  restrictions that are very difficult for a first grader.
She can't run or jump, go on the slide, swing or monkey bars. The risk of breaking her leg still there.
Many days she comes home from school and tells me that nobody wanted to play with her. It breaks my heart. I try to make her understand how the other kids like her but also like to run and jump.
The school  makes special adjustments for her on PE classes and other activities.
So, we have a little china doll, she is beautiful and we love her.
We don't know what the future will bring. She has a "mild" case. But things can change. NF can bring many issues. We trust the Lord and she is on His hands.

The foundation has a car that is every year at the 24 hours of  Daytona for their Racing for Research program.
Saturday, the local chapter had a party here at the  Los Angeles area.
The raffle table. See my Valentine's Basket there?
Brenda, Kelly ( the Foundation's representative at the Los Angeles office) and Ray, another NF hero.

Brenda and Ray helping with the raffle.

Some of the kids making bubbles.

The race is over and it was a success, but the "race" against NF is everyday.
Next year the car will be at the 24 hours of Daytona again, and we will be fundraising  for this and other events through out the year. One day they will find a cure.

Now, the swap party!
Amy, from Petal picking designs is following me...and I am following her.
She has many darling projects on her blog.

Jordan, from Military spouse house is a very creative lady. Many great ideas on her blog.
She is following me, and I am following her now.

That's how the party works: I follow you,  you follow me.

Here is the link for the Swap party again. Please join us.

Thanks for stopping by.

Ana Paula


  1. Thank you for mentioning me and your kind words! Your daughter is beautiful and I will be praying that she stays strong. It is so wonderful that they have events like this to help raise money to fund research and hopefully find a cure. I'm sure it is also a great way for your daughter to make new friends and have a fun day!


  2. Ana, thanks for joining us again. See you next week :)

    Brenda has really come a long way. She's so cute and very sociable.