Drew Ferrandino was once a boy who ran, jumped and played.  

Today, he is a child who requires constant care. 

Drew, an eight-year-old second-grader in Newtown, Pa., developed normally until the age of three with the exception of a speech delay. Then, shortly after he turned three, Drew began having seizures. A neurologist diagnosed him with childhood epilepsy; the doctor – and Drew’s parents – hoped the toddler would grow out of it. 

Convinced that something else was wrong with their son, Katie and Tony Ferrandino embarked upon a two-year search for answers, calling upon every imaginable specialist along the way. In the meantime, they watched helplessly as Drew gradually lost his speech and his ability to eat, walk and use his hands.

On January 30, 2007, the Ferrandinos received devastating news: Drew had been born with a form of Batten disease called late infantile neuronal ceroid lipofuscinosis (LINCL). LINCL, they were told, is a fatal neurodegenerative disorder. Drew, already five at the time of the diagnosis, had a disease with a life expectancy of just eight to 12 years. 

Immediately after the diagnosis, Katie and Tony refocused their energy on the search for a cure. Just six months after that fateful day in January, Drew became the fourth of six children to undergo a neural stem cell transplant as part of a historic phase one clinical trial. Doctors at Doernbecher Children’s Hospital in Portland, Ore. implanted the stem cells directly into Drew’s brain. 

Today, it is still not known whether the surgery Drew endured can one day prove to be a cure for Batten disease. What is certain, however, is that even as the disease has stolen more of his abilities, his will and determination have not wavered. “He faces this disease with a smile,” says Katie. “He has an amazing spirit and is loved by everyone who knows him.” 

Drew has made a particularly huge impact on his classmates at school. The seven- and eight-year-olds read to Drew, play games with him and provide hand-over-hand assistance so that he can participate in other activities. “Drew has a gift to give, and these children have embraced him as if he didn’t have a disability,” says Katie. “It is amazing to watch.”

Determined to find normalcy in a situation that is anything but ordinary, the Ferrandinos work to stay active. Despite his declining health, Drew joins his parents and his older brother, Gavin, in outdoor activities such as skiing, biking, swimming, going to baseball games and taking walks at the park with their dog, Bella. Katie and Tony focus on one day at a time and try to make every moment special for both of their sons.

The world of the Ferrandinos moves quickly, but this fast-paced family cherishes the simple moments most of all. “Every morning when we wake up, I say ‘Good morning, Sunshine,’ and he gives us a huge, beautiful smile,” says Katie. “It gives us the strength to get through each day.” 

To newly diagnosed families, Katie implores, “Never give up hope. Together, we can find a cure.” And then, the mother of two reminds us all of one of life’s greatest truths:

“Every moment is a gift.” 

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In 2009, the Ferrandinos founded Drew’s Hope Research Foundation; the nonprofit provides financial support for Batten disease research and promotes awareness of the disease. To learn more about Drew’s Hope Research Foundation and the courageous little boy for whom it was named, click here.