BENEFITING: Neurofibromatosis Incorporated Northeast
ORGANIZER: Neurofibromatosis Incorporated Northeast
EVENT: 2015 Boston Marathon
A Young Member of our NF Community
As told by her mom, Heather
Olivia was born in May 2012 without any complications. At birth she had a few café au lait birth marks, and more appeared as she got older. After her pediatrician mentioned that they could be related to neurofibromatosis, I decided to have Livvy tested. Waiting for the test results was tortuous with the realization that the dreams for her life may not be what we had hoped ...and planned. At 8 months old the diagnosis of NF was confirmed.
Livvy was constantly ill with ear infections and vomiting, plus she had difficulty breathing and had a very raspy voice. At 17 months old she went for her first ENT doctor's appointment to find out if tubes in her ears would help. During the appointment, the doctor discovered she had a growth in her airway; Livvy had surgery 10 days later only to find out through an MRI that the tumor was larger than they thought and further down in the throat. After more surgeries 30% of the original tumor remained. Following one of the surgeries she had a massive bleed from the surgical site and was put on a Med-Flight to Boston and put in the I.C.U. After waiting as long as possible, Livvy had to undergo a tracheotomy in order to help her breathe better.
Very recently, because of her situation, Livvy was the youngest participant to join a clinical trial using the drug Gleevec that is being run out of Indiana University. Livvy is doing better and has re-started her daycare program so she can be with her peers and build social skills. Her weight is beginning to stabilize and she is gaining in a healthy manner. Livvy also undergoes many weekly appointments for speech and feeding therapy, and these forms of therapy have allowed her to regain her desire to eat and progress with her ability to speak.
Livvy is a very smart little girl and continues to amaze everyone with how well she is progressing cognitively. She is such a happy girl who is the highlight of so many people's day and despite what she faces, makes everyone realize how precious life is and how to love life through any challenge.See More — with Livvy Latham./by Heather Letham ( Livvys mommy)