Charlotte was born with 5+ cafe au lait spots, an extra little toe on her right foot and tibial dysplasia on her right leg. We brought these symptoms up to our pediatrician at about 4 months old with the question of neurofibromatosis as a possible diagnosis. Charlotte pediatrician sent us to genetics at Children’s Hospital Denver where Charlotte did not meet the required amount of clinical signs to be diagnosed clinically, but it was probable. We as parents elected to have the genetic testing done and Charlotte was officially diagnosed at 6 months old.
As many NF Hero’s and families know, NF is constantly on your mind and the most important thing is to be aware and to constantly monitor the Hero. Charlotte wears a brace on her right leg to protect it from being broken and we are visiting the orthopedist every six months to be re-fitted. Charlotte will have to wear a brace possibly forever; hopefully she will never break her leg and we will not have to consider amputation.
As a family, we participate in local fundraising events including one amazing experience where Charlotte had the immense pleasure of meeting Ian Desmond! We also participated in the Denver Shine a Light on NF Walk and met so many amazing families and heroes!
Charlotte is a happy, happy toddler who loves people, loves water and loves being outside! She loves new adventures and is always so excited for new things! Charlotte loves to build! Her mega blocks are her favorite toy right now and she loves pulling her family in to play and build with her!
QUICK TAKESMotto Dream vacation Superpower |
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