“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.
you have a beautiful daughter! she just glows! i came across your story through a google search of NF. my very best friend has NF, and was diagnosised at age 7. in high school, she was a normal girl, ran, played softball, danced all the time! during her senior year she began to go down hill. now, she is 24, many many surgries later, and much more handicaped. i bathe her, clothe her, help her as much as i can...but tonight, i am at a loss. it hasnt even been a year since her last surgry and she is in bad shape. tonight she went to the ER because the tumors are pressing on her breathing tube making it almost impossible to breathe. we are in the state of ohio, and no one here will operate on her, so she has to go to dc for her surgrys where she has a wonderful, talented surgen. but tonight, i am sad, and discouraged. looking for an insperation...which i found in your little girls story. so thank you, i wish you and your family the best, and pray that everyone pays attention to the disase, so that one day, your daughter and my best friend can see a cure. god bless!
I have a daughter that has NF1. I have ran into so many doctors that don't know what it is and don't know what she needs. I really wish that there was a better way for mothers to get this out so everyone knows what it is. My daughter is 3 years old she has all the cafe-au-lait spots, the freckling in the armpit and some learning disablities. She is going in for a MRI but the doctor won't do it on all of her body which makes me mad because she has been falling alot lately and I believe there is something wrong with her spine. But like you said all we can do is get it out there to who may listen to us about it. Thank you for little girls story it does help to know I am not the only one that thinks everyone needs to know about NF.