Meet Samuel

Samuel was born in May 2005.  He was a healthy baby and hit all the typical milestones up to age 2 ½ years.  At that point in time, his parents Jennifer and Joe noticed eye strabismus and hand tremors.   He slowly lost his acquired motor skills and eventually had to have a g-tube for nutritional needs.  At age 4 ½, Samuel had to have a tracheotomy due to respiratory failure.   

His fortune changed for the best in 2009 when the FDA approved pre-clinical ‘Emergency Care and Compassionate’ use of the novel drug EPI-743.  

Despite all the hardships,Samuel remains very positive and loves life!  He is now 14-years-old and attends middle school part time, where he works very hard.  

Some of his current health issues include osteoporosis and scoliosis due to being non-ambulatory. He also has hip dysplasia.  He’s tenacious during his therapy appointments and endures quarterly pamidronate bone infusions to prevent further bone loss.

Samuel is super social and never wants to miss a party!  Though he is now non-verbal, he is able to communicate with gestures.  Currently, he is learning an eye gaze communication system and is also making great strides in oral communication with a Passey Muir and an awesome team of speech therapists.

One of Sam’s strongest traits is his hilarious sense of humor—he’s very sharp and his smile and laugh are contagious! 

“Every day is cherished with our precious boy,” said Jennifer.

Sam’s biggest hero is his older brother Stephen.  Stephen and Sam were very close.   Unfortunately, Stephen died from Leigh syndrome at age 7.  Together as a family, they live and fight for Stephen every day.

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