Doctors told Tiffany and Ryan Huotari that their unborn daughter had zero chance of survival. Diagnosed with three birth defects assumed to be "100-percent fatal,GÇ¥ 8-year-old Angelika Grace Huotari was fighting for her life before she ever saw the light of day.
Born with a brain disorder called polymicrogyria (PMG), Angelika, or Kiki as she is known by her friends and family, has exceeded expectations from the moment she was born.-á Although her condition has resulted in disabilities, including cerebral palsy and epilepsy, Kiki is a cheerful and social young girl with an apparent zest for life. She lives in Monroe with her parents and six of her seven siblings.
"She's an amazing little girl,GÇ¥ Tiffany said. "She's just a love.GÇ¥
For several months, friends and family members have been helping the Huotari family fundraise for a van large enough to accommodate their family and that can be outfitted with a wheelchair lift. Currently about 4-feet tall, Kiki weighs 48 pounds ' a weight that is getting increasingly difficult for Tiffany to navigate.
"She grew a ton this last year,GÇ¥ Tiffany said. "She gained 8 pounds.GÇ¥
So far, they've held bake sales, garage sales, carwashes and even an ice skating fundraising event that took place in January to coincide with Kiki's birthday. In lieu of gifts, guests were invited to donate. "She loved it because she could skate with her walker,GÇ¥ Tiffany said.
Next on the fundraising agenda is a 5-kilometer fun run that will take place at Lake Tye. The event, "A Chariot for Kiki,GÇ¥ will take place at 9 a.m. on Saturday, April 25, at Lake Tye Park (14964 Fryelands Blvd. S.E.) in Monroe. Registration is $30 for individuals and $75 for families. Payment can be made via PayPal, cash, check or direct deposit to the family's Boeing Employee Credit Union account under the name Angelika Grace Huotari.
All proceeds from the event will go toward the purchase of the van.
Despite her disabilities, Kiki enjoys an active lifestyle. She loves the ocean and enjoys accompanying her family on many outdoor adventures. She is able to walk for short periods with the use of a walker, takes horseback riding lessons and goes swimming at the YMCA.
She loves spending time with her puppy, a 15-week-old German shepherd named Alli, who has bonded with her. Tiffany recalled that when they first began considering a puppy, some of the dogs would shy away from Kiki. But young Alli was drawn to Kiki right away.
Tiffany is hopeful that Alli can eventually be trained as a seizure dog. Kiki's epilepsy results in myoclonic seizures, which are brief, jerking seizures that occur a couple times a day. There have been times when the seizures came much more frequently, even occurring multiple times an hour.
"That's one of the downfalls with PMG,GÇ¥ Tiffany said. "You get these waves of hard-to-control epilepsy.GÇ¥
Kiki attends special education classes at Salem Woods Elementary School. On Mondays, Wednesdays and Thursdays, she spends full days at school, and on Tuesdays and Fridays she is picked up early to attend physical and occupational therapy at a clinic in Bothell. Tiffany recalled that, initially, she was nervous about letting Kiki attend school, but it has worked out extremely well.
"School is going wonderfully,GÇ¥ Tiffany said. "She has an amazing teacher, Ms. Kinney, with awesome [parapros] in the class and a fantastic team of therapists at school also. They are seriously so good with her: super in-tune with her needs, yet push her appropriately to grow and blossom.
"I feel so fortunate to have her in such a great school and atmosphere,GÇ¥ she continued. Kiki's aunt, Monroe resident Sarah Forstie, is amazed at how the young girl has been able to triumph in the face of great adversity.
"Angelika has faced and will continue to face many challenges, but she is an extremely determined girl,GÇ¥ Forstie said. "She always tries and perseveres.-á She holds amazing joy of life and has always been an inspiration to me. Her happiness and smiles are contagious, and she so freely shares her love and joy with the whole world."
Tiffany doesn't want Kiki to be bound by limits set by others. From the beginning, she and Ryan decided that they would "shoot for the moon and catch a falling star,GÇ¥ always working to aim high, focus on the positive and be grateful for the gift that is Kiki.
"That's kind of our little motto,GÇ¥ she said. "And she's done amazing.GÇ¥
To sign up for the Chariot for Kiki 5-kilometer fun run, email fivekforkiki@hotmail.com. The deadline for registration is Thursday, April 23. To contribute to the Go Fund Me account, visit www.gofundme.com/s2jwz4.
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