"At 16, Courtney was no stranger to the way cancer changes lives. She had lost a sister to the disease, and her mother had been battling recurrences for 21 years. Courtney’s own fight began when her mother’s was ending, with a pain in her knee that kept her from her usual summertime activities. The athletic, energetic high school junior assumed she had a sprained ligament. She put off going to the doctor, focusing her attention on her mom, Crystal. Crystal died on Christmas, at age 41. Through her grief, Courtney realized the pain in her knee had become severe. Within the week, her mom’s friends took her to The Children’s Hospital of Philadelphia (CHOP), where MRI revealed a mass. Then bone biopsy showed Courtney had a malignant tumor. Courtney suffers from Li-Fraumeni syndrome, as did her mother and sister. It is a rare condition caused by alterations in TP53, a very important tumor suppressor gene. Half of individuals with Li-Fraumeni will develop cancer by age 45, with tumors beginning in childhood and adolescence.”
Madeline Ann Bozzone is 5 years old, her birthday is July 8, 2010. She lives in Drexel Hill, PA with her brother, Peter sister Sophia and Boxer puppy, Miles. Miles was named after Madeline’s Milestones- Madeline’s team name for the walk4hearing!
“I love Temple’s HootaThon! We danced, played, and ate food with big kids!” -Madeline (2013).
Fun Fact: Madeline’s first basketball game was a Temple Owls game versus Bowling Green State University. While Mommy and Daddy cheered for their alma mater (BGSU), Madeline and her sister and brother cheered for the cherry and the white. We didn’t know if she would hear much since her hearing aids were very new. We were a little uneasy whether the abundant amount of noise and distracted sounds she heard in the Liacouras center would have a negative impact on her. Instead, it was a tremendous positive experience. Madeline was in awe of the new sounds she never heard before especially the Temple Pep Band, Dance Team and Cheerleaders. She was so happy that she wanted to get her picture taken with her big sister and a Temple Owl Cheerleader.
CHOP saved Charlie's life. When treatment for Charlie's intractable epilepsy waned at different hospital, we brought Charlie to CHOP. They believed in Charlie like we believed in him.
In 2012, Charlie had no receptive speech or expressive speech, was unstable when walking, and, most importantly, was having 100s and 100s of subclinical and drop seizures daily. He was on five medications and did little more than passively enjoy our outings to museums, parks, the zoo and visits with family. He was sweet and happy, but suffering and not getting any better.
But once we came to CHOP, Charlie improved greatly. The brilliant neurologists and neuro team tweaked his Ketogenic diet, changed his medications, performed brain surgery and gave him intensive rehabilitative therapy.
After his surgery February 7, 2013, where CHOP's extraordinary surgeons removed a malformation in his brain, Charlie underwent months of daily physical therapy, occupational therapy and speech therapy. After about four months, he was released from PT because he was performing above expected standards and we continued for almost two years as an outpatient at the wonderful Seashore House at CHOP.
Now, Charlie attends school with other special needs kids five days a week, six hours a day. He knows the alphabet and can count to 20. He can feed himself, help with dressing himself, get in and out of the bath tub, follow directions, play with blocks, enjoy books, play with cars and trains and so much more.
Like many kids, Charlie enjoys his mom's iPad and has several apps he likes a lot, including many spelling apps and, of course, Netflix, which Charlie uses to find and watch his favorite shows, Sesame Street, Thomas the Tank Engine, Dora and Wonder Pets to name a few.
Everyday, Charlie is becoming a regular little boy who loves trucks, the playground, school and is always ready to say, "Hi," and "Bye," and shake hands or give a high-five. And he always has a hug for mom or dad or anyone who needs a good hug. And, if you get a hug from Charlie, it's a special thing. He's a great hugger.