Pom­fret fam­ily serves as area March of Dimes am­bas­sadors

Pom­fret fam­ily serves as area March of Dimes 2016 am­bas­sadors

Maryland Independent - - Front Page - By SARA NEWMAN snew­man@somd­news.com Twit­ter: @in­dy_­com­mu­nity

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.”

STAFF PHOTOS BY SARA NEWMAN

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.

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