As parents, we celebrate the simple things in our children’s lives—but can quickly forget them: the first word, standing up, walking, the first birthday, the first day of school, tasting a new food. We sometimes take these milestones for granted.
That’s not the case for the parents of Felix Henry. Felix has a severe form of epilepsy called malignant migrating partial seizures of infancy (MMPSI). MMPSI causes severe developmental delays and may shorten his life. His little body experiences dozens of seizures a day. So far no treatment has been able to stop the seizures. Felix’s family transferred to Gillette nearly a month ago to learn more about their son’s condition and try new treatments.
Chubby, dapper and adored, Felix likes being cuddled to his parents’ chests because it helps his breathing and he enjoys the closeness. His 3-year-old brother, Oscar Henry, comes to see him often.
Our staff members have filled the walls of Felix’s room in our pediatric intensive care unit with brightly colored artwork. Jen and Pierre-Gilles Henry, his parents, are intent on, as his father says, “steadfastly loving and appreciating Felix as he is right now.” Meanwhile, they’ve started a Go Fund Me page in Felix’s honor to raise money for epileptic encephalopathy research.
Felix celebrated his 5 month birthday on Friday, March 11.
Jen and Pierre-Gilles Henry, his parents, wanted him to have a party and a cake, and to taste chocolate for the first time.
“Felix is perfect in his own way,” says Pierre-Gilles Henry. “We love him.”
During the party, Felix had three seizures. Didi Mon-Sprehe, M.D., medical director of the pediatric intensive care unit at Gillette, comforted him through every one. The party went on.
Nurses, social workers and child life specialists all showed up with gifts in hand to wish Felix a happy birthday.
This simple gesture created a moment his mother and father will cherish forever.
Everyone sang Happy Birthday, the cake was cut, and Felix got his first taste of chocolate.
Felix opened his eyes after the cake touched his lips.
“There is magic in these moments,” says Pierre-Gilles Henry.
Editor's note: Sadly, Felix passed away in April 2016.
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