Colleen Giblin Foundation

Meet some of the kids whose lives have been changed thanks, in part, to the work of the Foundation.

Danny was a typical baby boy until suddenly suffering a stroke at 20 months old. It left him with weakness on his right-side, and a severe seizure disorder. While still an infant, he endured a rare 14 hour brain operation to relieve him of the hundreds of seizures he experienced daily. The surgical procedure disconnected the healthy right hemisphere from the damaged left hemisphere.

All who know Danny are amazed at the remarkable gains he has made since then. Now 20 years old, his seizures have decreased dramatically and he continues to embrace each day as a gift. Danny will graduate in May of 2008 from a school for "special" children. He is looking forward to a new phase in his life which will include: continued therapies, working his weekly job in a local video store, traveling, and simply enjoying life with family and friends.

For many years, Danny served as our 'Poster Boy,' a true example of the Hope and possibility that now exists for kids with neurological diseases, thanks to the efforts of the Colleen Giblin Foundation, and the breakthrough research of Dr. Darryl DeVivo and the medical team at the Colleen Giblin Laboratories.

At eight months of age Marcus was an active baby boy who was crawling, standing, and getting ready to walk. One day, without warning, he collapsed to the floor and briefly fell unconscious.

This was the first of the hundreds of seizures he would suffer in the years to follow. At the Colleen Giblin Laboratories, Dr. DeVivo and his team worked tirelessly to discover a medication regimen that would bring Marcus' seizures under control. As it turned out, these seizures were only one part of a wide range of developmental problems that afflicted Marcus. These conditions would require speech, physical, and occupational therapy as well as special education programs.

Marcus, now 18, still suffers the occasional seizure, but he leads a full life as a special education student at a public high school, where he sings in a 250 member chorus. He also enjoys playing on local Challenger sports teams and pursuing his interests in history, bird-watching, and chess. Marcus is one of the many special needs kids whose lives have been changed by the specialized medical research done at the Giblin Laboratories under Dr. DeVivo's direction.

On January 1, 2003 Robert Christopher Allen, made his entry into this world. His parents took him home to love and raise him just like any other baby - or so they thought. On February 28, 2003, they learned that God had a different plan for Bobby and for them, his parents.

When Bobby was eight weeks old, he suddenly stopped breathing in the middle of the night. They rushed to the emergency room, and quickly transported to Boston Children's Hospital where he stayed first in the ICU, then in the neurology unit for five days. After numerous tests, the Allens were given news that at the time was incomprehensible.

Working collaboratively, Dr. DeVivo of the CG Laboratories and the Pediatric Neurologists at Boston Children's Hospital, diagnosed Bobby with a rare (there were less than 100 known cases in the world) brain energy metabolic disorder called glucose transporter deficiency syndrome (GLUT1).

GLUT1 is a disorder that prevents the cells from picking up and transporting glucose to the brain properly. Since glucose is the principal source of fuel to the brain, children with this disorder have a myriad of physical and mental disabilities, ranging from mild cognitive dysfunction to severe cases where the child cannot walk or talk.

The only known treatment to date for GLUT1 is a very restrictive diet called the Ketogenic Diet which is a treatment of last resort, used for children with seizure disorders that do not benefit from conventional drugs. Dr. DeVivo and his team of researchers at CG Laboratories are working toward finding a more effective treatment or cure for GLUT1. For children with GLUT1, it is a race against time. Obviously, as they develop, the damage becomes progressively worse. Clearly the sooner there is a more effective treatment, the better the odds are for Bobby and for all children with GLUT1 to lead, healthy, productive lives.

There is nothing more painful for us, as Bobby's parents, than to look into those beautiful eyes and see them clouded with the pain, confusion and fear caused by this merciless disease. As anyone with a sick child knows, the feeling of helplessness is heart wrenching. Each day we pray that we can make a difference in Bobby's lifetime and in his life, as well as in the lives of the many other afflicted children.

Bobby is now 4 ½ years old. He continues to amaze his parents as he tolerates the diet, and as his brain thrives. He is in preschool where he works hard on developing his motor skills and improving his speech. He adores his teachers and classmates, and the feeling is mutual. Bobby has continued to make 'breakthrough' progress, thanks to the diligent and loving care of his doctors, teachers, friends and family.

Bobby is a true source of inspiration and a cause for Hope among kids with GLUT1.

In Bobby's words:

"I want to be a doctor when I grow up just like Dr. DeVivo and Dr. Bergin (his neurologist)."

"When God gives me a cure, I am going to try birthday cake."