Angelina's Story

Memories Captured by Rebecca Sehn Photography

http://www.rebeccasehn.com

Eight year old Angelina is a very social little girl who would rather be around people than play with toys. She does, however, show an interest in electronics. This Tiny Light enjoys listening to music and playing with the switches on her computer, and also loves her iPad. The fact that she is wheelchair-bound does not stop her from playing her favourite game, musical chairs, and going down slides with help from her parents.

When Angelina’s mother Helen was 17 weeks pregnant, doctors asked her to come in for weekly ultrasounds. She knew this meant that something might be wrong but didn’t get any real answers until several weeks later. When she was 22 weeks pregnant, Helen was finally told her baby had some serious brain abnormalities. Angelina was diagnosed with a rare condition called OFD1 (oral-facial-digital syndrome type 1). There are eight categories, with Type 1 involving oral, facial, digital, and brain abnormalities. This condition affects primarily females as it is caused by a mutation of the X gene. Angelina was in the hospital for the first seven months of her life and has had many hospitalizations since. She is fed by G-tube and is at high risk for pneumonia and seizures.

Due to the rarity of OFD1, it is hard for Angelina’s parents to connect with other families facing the same challenges and this has been difficult for them. However, they have learned to take things one day at a time and their faith in God has helped them throughout their journey. Despite their struggles, Angelina brings immense joy to her family. “We cannot imagine a life without her. Her smile, which lights up our day, is invaluable.”

Story by Emily Harrison