Family portraits honor legacy of terminally ill children

HONOLULU (HawaiiNewsNow) - Seven month-old Julius Telang was the most happy when he was surrounded by people.

"He was super charming.  He could definitely draw people's attention with his eyes and his little sounds," said mother Denise Karabinus.

Doctors had diagnosed the infant with spinal muscular atrophy soon after he was born. A condition that affects muscle movement.

"You have this beautiful newborn baby who seems perfect in every way to you and doctors are telling you there is nothing they can do to help your child," said Karabinus.

While Julius was in hospice someone there suggested having pictures taken.  The family was put in touch with the organization Now I Lay Me Down To Sleep.  Volunteers provide families with free portraits for terminally ill newborns as well as remembrance photography.  For Karabinus these pictures along with memories made that day are priceless.

"It was like a moment of just being a normal family.  And getting to engage with our son the way anyone would engage with their child," said Karabinus.

Karabinus was so moved by the experience that after a year of training she herself is now a volunteer.

"It's just my way of being able to give back to the community.  People were so generous and so helpful when my son was very sick.  So it was very important for me to be able to do that for other families," said Karabinus.

Karabinus and her colleges are on call working in homes and hospitals across Hawaii.  Most are mothers who have lost an infant themselves.

"Families have been very grateful,"  said Leilani Kahoano.

Kahoano is a neonatal intensive care nurse.  She says the images serve as an important step in the family's healing process by honoring the child's legacy.

"That little baby still exists in their family," said Kahoano.

"It's very hard work but the families are so grateful and so appreciative and I know how much it means to them," said Karabinus.

Karabinus will be taking part in a Neonatal Professionals Institute conference on Sept. 16 at the Hale Koa Hotel.  She will be speaking about her own experience as well as the organization Now I Lay Me Down To Sleep.  Her presentation will begin at 9:45 a.m. and is open to the public.

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