Stories of NF: Malina
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May 11
2011
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Ed note: During May, NF Awareness Month, we are posting stories of individuals and families living with and overcoming the challenges of NF. If you like this story please share it with your friends and family via email, Facebook, Twitter etc. Together we can do wonderful things to promote NF awareness and research, thank you for your commitment to the cause.
My name is Alicia and my husband and daughter both have NF1. Kevin and I both knew that there was a 50% chance that any child that we had could get NF. Malina was born in July of 2004 and was diagnosed with NF at 6 months old. She presented with the cafe-au-lait spots as well as tibial dysplagia of the right leg. This was the first orthopedic side effect of NF within the family.
Malina has worn a right leg brace since she was 6 months old, and although she was delayed in walking, it does not stop her. She has completed running the mile tests at school and earned "feet" which are awards for completing the mile in a given amount of time. Malina is currently excelling in 1st grade. She has terrific writing skills and reads at almost a 4th grade level. She has received the Student of the Month Award this year. School is a place of strength for Malina. She overcomes her leg disablility by acheiving so well wih her schoolwork.
Malina also takes ballet and horseback. This is her 3rd year of ballet and 2nd year of horseback. Her spirit in dance is tremendous and it is a pleasure to watch her. She is an excellent horseback rider. This past weekend, she competed in her 3rd horse show. She earned two 4th place out of 7 ribbons in her first show, two 1st place ribbons in her second show, and one 1st place and one 2nd place in her most recent show. Her enthusiasm ans excitement make dealing with NF so much easier.
Malina is a true example of living life to its fullest despite what obstacles are thrown your way. Although we go through difficult and emotional times, Malina comes back fighting even harder. We do not see Malina as different...we see her as a shining example of how to live life and enjoy every moment.
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written by Diane Akutagawa, May 16, 2011
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He has not started saying any words other than mama and dada....so we are watching that. I would love to find out more what your daughter has been through. Has she had any breaks in her leg???? What doctors do you go see. I did not have many signs of NF growing up as a child. I now have neurofibroms and a large plexiform tumor on my knee that has gotten larger after having two children. So this bowing of the bone is so new to me. I know it is a wait and see kind of thing, but that is so hard. The doctors do not think contact sports will be in Hayes' future....but like your daughter looks like she is doing WONDERFUL!!!! Thanks for your story....it was very uplifting for me!!!!