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Family raising funds for toddler with rare disease
Her mother Kerry remembers baby Jayda as quite a character.
"In the fall, she would sit there and make raspberries and everybody just thought it was hilarious," she said. "In the Christmas videos, she got everyone to smile."
"She always was smiling," recalled Kerry's sister, Kristy Trabont-Patriquin of North Bend. "She was in the crawling stage. She was all over into things. She did this thing with her mouth and, of course, all her cousins would die laughing and when she knew she had their attention, she would perform for us."
Jayda Gould was born April 18, 2004, the second child for Kerry and her husband Taj of Carnation. They also have a 4-year-old son, Riley.
Jayda was healthy by any medical standards. Socially, she was developing on par with others her age. Kerry, 32, said she remembers Jan. 3 of last year, the date when Jayda woke up congested and ended the day changed forever.
That was the day Jayda seemed a little stuffy, so Kerry gave her some medicine and dropped her off at daycare. Minutes before Kerry returned in the evening to pick up Jayda, her caregiver, who had put Jayda down for a nap, found her unresponsive, hot and limp.
"She really did look like a dead baby; just breathing really fast," Kerry said. "The hardest part was when she was in pain and we couldn't do anything to help her."
Rushed to the emergency care unit at a nearby hospital, Kerry said that it took a week for the doctors to tell her what was wrong with Jayda, who had developed a high fever and began having seizures almost immediately.
Admitted to the intensive care unit at Children's Hospital and Medical Center in Seattle that same evening, a CAT scan revealed no sign of tumors or head trauma; an MRI revealed brain damage.
Put in isolation for further examination, her family was required to wear gowns, masks and gloves as no one knew the cause of Jayda's condition at that point.
"We were going from a completely healthy child to the shock of not knowing if she was going to live through the next day," Kristy said. "She didn't look like Jayda to me with all the tubes they had in her. It was a, 'how could this happen' type thing."
On Jan. 13, once Jayda was confirmed to be clear of any viruses, Kerry was able to hold her daughter for the first time in days.
"She was basically a 20-pound newborn," Kerry said. "There was so much I didn't know."
Jayda was discharged from the hospital on Feb. 11, 2005.
"The first part was more or less shock," Kristy said about when Jayda was first admitted. "As soon as she started to come out of it, you could just see that it wasn't going to be the same again."
Jayda was diagnosed with Hemorrhagic Shock Encephalopathy Syndrome, a rare disease with a high mortality rate most common in babies. It creates extensive neurological damage. Its origin and cause is unknown, though doctors think that in Jayda's case, her brain may have gone into shock because of a raised internal temperature.
"There were definitely some scary times," Kristy said. "She has gone through a lot."
As a result of her illness, Jayda experiences seizures daily (sometimes as many as 30), takes five medications and is unable to move intentionally. She travels in a personalized wheelchair and receives physical therapy. Since the diagnosis, her heart has stopped at least twice.
"It's been a roller coaster," Kerry said. "It's such a helpless feeling to know you can't help them."
She does smile and seems to enjoy interacting with her young cousins, listening to music and watching Baby Einstein videos, Kerry said.
"I see her smiling at the ceiling and I see her smiling at us, but what's going through her mind, I don't know," Kristy said, noting that the brain damage is permanent, but that her physical movement may improve with time and effort.
Kerry found out she was pregnant again while Jayda was in the hospital; she gave birth to a healthy baby named Regan two and a half months ago.
"There is never enough of me," she said about trying to balance her attention among her three children.
Kristy decided to put together a dessert and raffle as a way to raise money for Jayda's medical bills and care, as well as for the family's needs.
Kerry, a former teacher at Mount Si High School and Cedarcrest High School in Duvall, stays at home with Jayda since she needs round-the-clock care. Taj, a Mount Si High School graduate, works full time.
"More or less, I know that my sister's a really strong person, but the reality is it's so financially tight, it's never ending," said Kristy, who has two young children of her own. "The most horrible thing is to see what my sister is going through and, of course, her husband ... . I know she has her breakdown times, but you try to be positive."
Desserts available will include cakes, pies and more. Food donations have come from The Cheesecake Factory, as well as from gourmet chef Janynie Wetherbee. There will also be nonalcoholic refreshments available.
Items up for raffle will include Starbucks gift baskets worth more than $200, additional coffee and restaurant gift certificates. Entry to the event is $2; raffle tickets are $1; monetary, services and product donations are accepted including size-4 diapers, clothes, gift certificates and toys.
The support of the community, family and friends has been vital, Kristy said.
"More or less, I see what my sister goes through and I don't know how she does it," said Kristy. "I can't even imagine what it's like. I wanted to do something. I don't have a lot of money myself, but at the same time, the little things we take for granted, she's been without for so long."
Doctors say they will be better able to gauge Jayda's progress and future possibilities when she reaches age 5.
Kerry said she still sees Jayda as Jayda, even with the trauma she has experienced in her young life.
"She's been like this for longer than she has been, and I don't like to use this word, normal," Kerry said. "It's just what it is. It really reminds me that not everything is in your hands."
Jayda has been improving with her physical therapy. She is building her neck strength and her mother is about to start her on a special diet with the goal of decreasing her seizures, but her future abilities remain unknown at this point.
"She's still Jayda to me, she's happy, she has quality of life and that's all that matters," Kristy noted.
"I am an eternal optimist," Kerry said. "The doctors have left all the doors open for all possibilities. She'll be there eventually, whether she walks at 5, 10 or 15, she'll be there."
The dessert and raffle fund raiser will be from 6-8 p.m. Saturday, April 22, at the North Bend Sallal Grange 955, 12912 432nd Ave. S.E., North Bend. The event is open to the public and the cost is $2 for entry and $1 per raffle ticket. All money raised will go toward medical and home expenses for Jayda and her family. Donations may also be made at any Bank of America branch under the name "Friends of Jayda Gould." For more information, call (425) 888-0312.