I will be running in my undies this February so kids like Ella can grow up happy and healthy.
When Ella was 18 months old she was diagnosed with NF1 (Neurofibromatosis Type 1). Her family was completely shocked at the diagnosis; they had never heard of NF1 and were devastated to find out the difficulties she would likely face in the future.
Unfortunately Ella already has one of the more problematic and rare complications of this neurological disorder: tibia dysplasia. This means the bone in her lower left leg is not “normal.” It is fragile and likely to break; if it does chances are it will not heal. Many children with this end up needing surgery to fix the bone or even amputation when the bone is unable to heal. Fortunately, Ella’s leg has not broken – yet. She wears a brace on her left leg to protect it and many of the typical things that kids do at her age she cannot because it is too much of a risk for breakage.
Ella faces her challenges with a smile and determination and finds a way to live life to the fullest. Although she cannot play soccer like her siblings, she is the loudest fan cheering for the team near her home in Wellesey, MA. She loves Spongebob Squarepants (who has “spots like Ella”) and is an absolute blessing and inspiration to her family.
NO CHILD SHOULD HAVE TO GO THROUGH THIS and you can help.
Donate or join our team of undie-clad runners. Your donation will provide critical funding for the research that will ultimately enable a cure.
Together, we can be the difference in the lives of children like Ella and help #endNF.