Pomfret family serves as area March of Dimes ambassadors
Pomfret family serves as area March of Dimes 2016 ambassadors
Like many other four year olds, Kamryn “Kami” Grimes loves attention, silly sounds and interaction with her family. Unlike other four year olds, Kami was born premature and suffers from epilepsy, periventricular leukomalacia, spastic quad cerebral palsy, cortical visual impairment, torticollis and asthma.
Periventricular leukomalacia, PVL, is a brain injury found in infants, particularly premature infants. Shauna Grimes, Kami’s mother, went into premature labor with Kami at 30 weeks and was put on strict bedrest. A few days later Kami was born and was in the neonatal intensive care unit, NICU, for two months.
“The whole experience was terrifying,” Shauna said of her daughter’s birth. “Because you know that your water broke so early, you know how extremely horrible that could be, you fear for your child’s life.”
From the University of Maryland Charles Regional Medical Center, Shauna was flown to the University of Maryland Medical Center in Baltimore.
“You knew there was a possibility she couldn’t make it and it was just a horrible, horrible feeling,” Shauna said. “And they didn’t know what was going on, they didn’t know why. We were just praying she would live as long as possible... It was definitely a very trying and terrible experience.”
Shauna gave birth via emergency C-section and said she knew her early delivery would affect Kami.
“We knew she may not be fully functional. We prayed she would get the minor side of PVL but she got the major side. Through it we learned a lot, prayed a lot and just kept our faith,” Shauna said.
At nine-months-old, Kami had her first seizure and almost lost her life. Shauna said she continues to have about two to three seizures a week, varying from minor to major. Though Kami has several diagnoses that impact her life, it is the seizures that worry Shauna the most.
“The seizures could take her life at any moment,” Shauna said of her daughter’s epilepsy. “At any given time there’s things that could take her life.”
Despite the struggles and day-to-day difficulties, Shauna said her daughter’s frequent smile keeps her going.
“She is just a miracle,” Shauna said. “She loves life, boy, she really does. She teaches you about what life is all about. When you’re having a bad day and you see this little girl just smiling and struggling through all the pain, you realize that life isn’t so bad. She keeps me going. It’s very very hard dealing with doctors, appointments and seizures, every day struggles and having to do everything for her but she makes it worth it.”
The family, including Kami’s sister Kassidy, 17, and brother Landen, 10, was named the 2016 March of Dimes Suburban Maryland Ambassador Family to share its story and raise awareness for the organization’s mission to prevent birth defects, premature birth and infant mortality.
The March for Babies, the March of Dimes premier fundraising walk, will take place for Southern Maryland on May 1 at Regency Furniture Stadium in Waldorf. Shauna said she hopes her family can inspire others to get involved and stay informed about premature birth.
“We do it because we want to try to spare others from having to go through what we went through,” Shauna said. The family has been involved with the March of Dimes since Kami’s birth and said the organization’s mission is special to them. Their own team name for the march is called Kami’s Kourage.
“It means so much to us,” Shauna said. “It’s very personal. Of course our goal is to help make a world full of healthy babies.”
Though her family is busier and more stressed caring for Kami, Shauna said she has taught them about life and how to not take life for granted.
“Of course if I could get her to walk and talk and crawl I would change that in a heartbeat because I want her to have more, I want her to be able to experience a normal life. So I would definitely change it if I could,” Shauna said of Kami’s diagnoses. “But I am very, very blessed and I know how blessed I am to have her.”
The family’s team is joining the March of Dimes Paint Night at the Greater Waldorf Jaycees on April 25 and is also raisining funds through its team page, marchforbabies.org/teamkami. Through this platform, Shauna said she wants to spread hope and awareness.
“Women who are pregnant, really do your research and try to stay as healthy as possible,” Shauna said. “And for people who are going through what we’re going through, don’t give up, stay strong, and be advocates for yourself and your child and other families.”
Shauna Grimes, of Pomfret, holds daughter Kamryn “Kami,” who suffers from periventricular leukomalacia (PVC), epilepsy, spastic quad cerebral palsy, among other diagnoses, after being born almost 10 weeks early. The Grimes family was named the 2016 March of Dimes Suburban Maryland Ambassador Family to share its story and raise awareness for the organization’s mission to prevent birth defects, premature birth and infant mortality.
Shauna Grimes wears a Kami’s Kourage T-shirt in her Pomfret home. Grimes’ daughter, Kami, suffers from periventricular leukomalacia (PVC), epilepsy, spastic quad cerebral palsy, among other diagnoses, after being born almost 10 weeks early. The Grimes family was named the 2016 March of Dimes Suburban Maryland Ambassador Family to share its story and raise awareness for the organization’s mission to prevent birth defects, premature birth and infant mortality.