Jacob's Story

Images Captured By Photo Tales by Carm

This Tiny Light is known to his parents as their "Unstoppable Jacob". The five year old is “terminally ill but terminally cute,” according to mom Ali. He loves to listen to music, sing, watch Elmo and cuddle.  He will kiss anyone who comes close and share his infectious laugh with everyone.

Jacob was born at 24 weeks gestation weighing only 710 grams. Three days later, he suffered a devastating brain bleed. The following weeks and months brought a host of diagnoses - long term brain damage, hydrocephalus, bi lateral cysts, leukomalacia, severe cerebral palsy, chronic lung disease, inability to swallow, visual and aural impairments that have led to both near blindness and total deafness. Jacob spent the first 11 months of his life in hospital, and has been back numerous times, including 30 invasive surgeries. He needs 24-hour monitoring, is strictly tube fed and requires oxygen at night and often during the day. Doctors have told the family to prepare for the worst several times, but Jacob keeps fighting and defying the odds.

Jacob started to smile and laugh when his parents were first able to bring him home from the hospital and he hasn’t stopped since.  “Jacob’s amazing! He totally blows me away, every day!” says Ali.  “His love is pure, his joy is overflowing; it is awesome to witness and live with…I hope I can learn everything he is here to teach us about life and love and what’s important in the world.”  The Tiny Light's future may be uncertain, but the family doesn't dwell on that. “Jacob is loved and he loves and there is nothing to fear when you totally let go and just be in every moment.” 

Story written by Angela Funk