Colton is a highly energetic, inquisitive four-year-old boy who loves marbles, playing tag, being tickled and all things Paw Patrol.  He is also the younger brother of Cooper, whom we are also raising funds for. 

Knowing that his mom carried the SCN1A mutation, Colton was tested for the variation at birth.  Nate and Whitney received the dreaded phone call from doctors 8-weeks after Colton’s birth, confirming he also had the SCN1A mutation.  Like his older brother, Colton’s first seizure lasted 35 minutes and occurred when he was 7 months.

Although Colton’s Dravet journey started out almost identically to Cooper’s, their paths have been anything from similar. 

After Colton’s initial seizure, he began experiencing myoclonic jerks in combination with status tonic-clonics.  At 11 months of age, Colton experienced a severe 75-minute convulsive seizure and 25-minute cardiac arrest where doctors were prepared his parents for his passing.  Miraculously, Colton survived the seizure and after a month in the hospital, gained back all the skills he lost, including his eyesight.  Today he still has residual speech impairment due to the trauma to his brain.

Ater 2 years of primarily tonic-clonic seizures, Colton began experiencing hemi-clonic seizures which he still battles with today.  These typically last over 30 minutes and always require rescue medication.  Although seizure control is still hard to find, Colton is doing very well cognitively and is thriving in a typical pre-k setting.  His mom and dad thank their blessings every day for the additional time with him they have been gifted and try their best to allow him to live while ensuring he is safe.

Whitney and Nate have come to terms with the fact that their boys may live at home into adulthood, they will probably not celebrate passing a driver’s test or even hold a grandchild of their own; however, they still pray for miracles and refuse to accept that this is the best life they can give their children.