|Welcome to our page! This page is dedicated to our beautiful daughter Ava Ocean. Ava has Neurofibromatosis or NF1. NF1 is a genetic disorder known for causing tumors throughout the nervous system. At the age of 6 months it was discovered Ava has a neurofibroma (tumor) on the C1 & C2 nerves in her spine. If this tumor grows it will put too much pressure on the nerves in her spine and she will lose motor functions. There is no treament and no cure for Ava. She will have to endure MRI's every 6 months, NF clinics and countless doctor appointments. We have to do something to help my daughter before it is too late. Joining the NF Endurance Team with the Children's Tumor Foundation to raise money for a cure is the path to help her and all of the other families effected by this condition. Ava has NF1 due to a change in her DNA structure which only happens in about 1 out of 3,500 births.
Ava is now 18 months old and continues to thrive despite her tumor. She is truly a miracle. Last year was a rollercoaster ride for our family but thankfully Ava's 3 month MRI's have been reduced to every 6 months. Tumor shows stable. Ava has touched and changed our family's lives in so many ways. We have changed our diet, sought other ways outside of doctors to help Ava and just continue to strive to be as healthy as can be to help Ava fight this. So many special people have come into our lives and really have touched us and helped us in so many ways it is really hard to put into words. My husband even starting running and is completing his first half marathon which is something he said he could never do. Our niece also joined the Endurance Team and completed her first half marathon with me this past January in Carlsbad, CA. Ava has been a blessing in so many ways.
Reef cheerleading at Carlsbad
As for me, I have decided to finally take on the challenge of completing my first FULL marathon, yes that is 26.2 miles on June 6th in the San Diego Rock N Roll Marathon. I decided to take on this challenge in hopes it would mean more donations this year! More money, more miles I will run!!! My goal is to expand public awareness of this condition and increase understanding of the challenges facing persons with NF. My hope is that a cure is found before Ava may have to deal with the many challenges NF can bring on at any time. Please take a moment and view the video below.
If you would prefer to donate by check, please make checks payable to: Children's Tumor Foundation and mail to:
Childrens Tumor Foundation
95 Pine Street
New York, NY 10269-0741
Please include this ID# on check Dawn Lowell SD-5013-10
THANK YOU FOR YOUR SUPPORT!