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. 

Felix Henry snuggles with teddy bear in Gillette PICUFelix with his mother and brother Oscar in Gillette Children's PICU

 

 

 

 

 

 

 

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.

Felix and his brother Oscar cuddle in Gillette Children's PICU

Artwork found in Felix's room at Gillette children's PICU

 

 

 

 

 

 

 

 

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. 

Chocolate birthday cake to celebrate Felix's 5 month birthday

“Felix is perfect in his own way,” says Pierre-Gilles Henry. “We love him.” 

Felix with his mom and dad in Gillette children's PICU

Felix sleeping in Gillette Children's PICU

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.

Felix with Dr. Didi Mon-Sprehe at Gillette Children's PICU

Nurses, social workers and child life specialists all showed up with gifts in hand to wish Felix a happy birthday.

Child life staff sing happy birthday to Felix at Gillette Children's PICU

This simple gesture created a moment his mother and father will cherish forever.

Felix's parents receive a gift for his 5 month birthday at Gillette PICU

Everyone sang Happy Birthday, the cake was cut, and Felix got his first taste of chocolate.

Felix's mom gives him a taste of chocolate for the first time at Gillette

Felix opened his eyes after the cake touched his lips.

Felix opens his eyes when he tastes the chocolate at Gillette PICU

“There is magic in these moments,” says Pierre-Gilles Henry.

Henry family photo at Gillette Children's PICU

Editor's note: Sadly, Felix passed away in April 2016.

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