On Nov. 26 the Grafinger family received two surprises: a beautiful baby girl, and a devastating diagnosis.
Emelia Grafinger was born with Apert syndrome and her family has been coming to terms with what this means for them.
“We did not know anything about that she was even going to have [Apert syndrome], it was just a surprise,” mom Samantha Grafinger said.
“She is doing good now, but she’s been through a lot already for someone who is so little.”
Apert syndrome is a genetic condition affecting one in every 65,000 babies. The rare condition causes the bones of the skull, face, hands and feet to fuse together too early during pregnancy.
Apert can cause a range of symptoms depending on how the bone growth occurs, including cleft palate, loss of hearing, impaired vision and intellectual disability.
Emelia has not left the B.C. Children’s Hospital since she was brought there from Chilliwack. She has been working hard to survive since birth.
“Her nasal passage is small on the inside, which makes it hard for her to breathe,” said Grafinger.
Emelia is on a feeding tube as she could not bottle feed without getting too much liquid in her lungs.
“Whether she gets colds, if she gets sick, that will be another struggle for us to get her safe, to get help. It will be a lot of travel back and forth,” Grafinger said.
Just shy of two months old, Emelia already has quite the personality.
“She’s very spunky,” Grafinger said.
“They call her the social butterfly — all the nurses love her.”
It is a long road ahead for Emelia and her family. Treatment of Apert includes surgeries to the head and face, as well as surgery for fused fingers and toes.
The family — Samantha, Gerald and their son Michael — stayed at Easter Seals for the first 30 days of Emelia’s life. They are now traveling back and forth between Boston Bar and Vancouver.
Food and bills double as the family lives in both places.
To help the family, friend Amanda Westerlund organized possibly the largest auction ever seen in Boston Bar on Jan. 20.
Bids on 145 items and a pancake breakfast by donation at the Community Hall brought in a whopping $7,806.
Westerlund said the money collected will be used for gas, groceries and other necessities for the family as Emelia keeps fighting to survive and grow. She is also taking donations by cash, cheque or through a Gofundme page.
“I knew they needed the support, so I just stepped up,” Westerlund said, adding she was moved to tears by all those who made the event possible by giving their time, money and auction items.
Westerlund has yet to meet the young girl she has spent weeks fundraising for. “But I’m dying to,” she said.
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