Fellow Fighter Destiny-Neurofibromatosis




“My daughter Destiny is 9 and she has Neurofibromatosis (Nf). All I do is tell her story and I spread awareness to whoever will listen. You would be surprised how many doctors and nurses that don't know what Nf is for instance here is my daughter's story.

Destiny was 10 months old when she was trying to walk. She took 2 or 3 steps and then she sat in the floor crying, there was nothing I could do to console her. Finally, after a while, I took her to the emergency room. While there they examined her and found that she had multiple fractures in her right leg and they saw the cafe au lait spots and said that they were bruises after she was misdiagnosed for child abuse.

Child Protective Services took her away and 2 days later she was seen by an orthopedic who diagnosed her with Nf. Her broken leg was tibial dysplasia and psuedoathrosis which is a congenital bone defect that sometimes occurs with NF. That's how I found out my daughter had Nf.

Destiny has had several surgeries to repair her leg but none of them helped and 2 years ago when she was 7 she had her foot amputated and she now wears a prosthetic leg as a result. She was also sent to a neurologist who found the tumor on her brain stem and the optic glioma on her left optic nerve. My daughter has to have a MRI every 6 months.

All I do is tell her story. I do it because I want the world to know what nf is. If the world knows there can be no more mistakes.

Destiny likes to read, draw, sing ,dance. She loves babies and video games and loves animals.

for all Destiny goes through she is a true inspiration to everyone. She may have Neurofibromatosis but that doesn't stop her from striving to be that best that she can be everyday and touching everyones life in the process.



















11 comments:

SoCalWendie said...

She is tooo cute! Just look at those glasses on that little face...what a cute brave little soldier!

Valerie said...

She is adorable! Thanks for sharing her story with us.

I love her smile! We can all learn so much from children.

Racn4acure said...

Thank you for sharing. No child should have to endure this.

DysFUNctional Mom said...

Thanks for posting her story. The family has my prayers!

Sandi said...

she is adorable and looks so happy. Good for her. Good to spread the word about this. I have a friend whose 3 year old boy was just diagnosed. I didn't know what it was before that.

MLG said...

What a fabulous little girl. She is adorable and such a addicting smile. Thanks for sharing her story.

Yo said...

she's adorable! i love her school picture :D she's full of life.

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carolann chalmers said...

im glad to see someone else telling their story about nf. more people have to be aware. my daughter is twenty now and has battled with it all her life so i know how hard it can be.