Devon's Story & Photo Gallery
Born on January 24, 2003, Devon Marie was a perfectly healthy child hitting all of her milestones until she was 18 months where she presented her first symptom...an unimpressive tilt to the head. Fast forward a few months later, she was diagnosed on Oct 12, 2004 with an Anaplastic Ependymoma brain tumor. Devon suffered from post-surgery Posterior Fossa Mutism in which she was almost completely paralyzed for almost 3 months. She underwent 6 months of high dose chemotherapy followed by a Stem Cell Transplant/Rescue...a 6 month remission resulted but only to reoccur in Nov 2005. She was then treated w/ 6 weeks radiation to the entire brain and spine. Her tumor remained stable for almost 3 years with the help of complementary and alternative protocols until November 16, 2008 when a new inoperable aggressive tumor was found. Devon earned her wings 3 weeks later on December 5, 2008.
​During her remission, Devon had an intense daily rehabilitation regimen of Physical, Occupational, and Speech therapy. And although these therapies were vital in her recovery and thankfully covered by insurance, Danny and I wanted to incorporate additional types of remedial therapies that we came about through information and recommendations from therapists, doctors, and friends. We were fortunate enough to have had the opportunity to send Devon to Hippotherapy and Aqua Therapy. (Hippotherapy is a form of physical, occupational and speech therapy in which a therapist uses the characteristic movements of a horse to provide carefully graded motor and sensory input. A foundation is establishedto improve neurological
function and sensory processing, which can be generalized to a wide range of daily activities. Aqua Therapy is physical therapy that is performed in the water. Aquatic therapy uses the resistance of water instead of weights. It aims to rehabilitate patients after injury or those with chronic illness, avoiding the amount of weight placed on the joints by exercise outside the water.) These are just two specific alternative therapies that both Danny and I saw an incredible increase with Devon's overall development...from day one! For example: after three days with the water therapy, her overall balance was improved...she no longer looked like the scarecrow from the Wizard of Oz trying to walk! After one day of Hippotherapy, Devon was able to speak with increased volume and her posture was more upright! Needless to say, each hospital visit from that point forward "wowed" the doctors and nurses who had treated Devon from the beginning.
Danny and I do not believe there's enough going on with these alternative therapies in terms of awareness and funding since it is so costly and usually not covered by insurance. Parents of children with special needs nowadays have more out of pocket expenses to cover just the required medical bills that alternative therapies can't even be considered.
Devon benefited greatly as did the other children with various conditions in her classes. It brought myself great joy to see the progress with all of the children almost from the start! I had no idea and was overwhelmed by the positive results both physically and emotionally. In speaking with other parents, they too were unaware of the amazing positive impact it would have on their children. We're talking about children with conditions ranging from autism, and brain trauma to severe ADHD. This is where we both felt the foundation can fill that void by giving parents/guardians the resources and funding so that their child may benefit in the same way as our Devon.