Sophea Keirstead, 6, center, with her parents Cassandra, rear left, and Carol Keirstead, rear right, and baby sitter Danielle Bergeron. Bergeron organized a benefit to raise money to allow the family to install a chairlift for Sophea, who suffers from congenital muscular dystrophy. Sun/ Bob Whitaker 05/22/2007
A Little Girl with a Big Imagination
By Rachel R. Briere,
rbriere@lowellsun.com
Lowell Sun (Lowell, Mass., USA)
LOWELL -- Sophea Keirstead has two fiancés.
She rehearsed with one and the other is coming over to practice soon. She has a tough decision: Who will meet her at the altar?
Her groom will have his hands full. Sophea has 25 children. She runs two businesses, a lollipop factory in Minnesota called "Sweet Lollipops" and a cupcake bakery simply called Cupcake Sophea.
Sophea is a 6-year-old with a wild imagination and weak muscles. She has congenital muscular dystrophy (CMD).
She swallows 16 pills daily, but needs a gastrotomy tube. She doesn't have enough strength to eat more than two bites of dinner. Sometimes she needs oxygen. The slightest cold can put her in a hospital bed.
"If we do an activity on Saturday, there is no way she can go to church on Sunday," says her mother, Carol Keirstead.
Fatigue is the thorn in her side. Sophea can walk for a short distance with a walker, defying the doctors who said she would never take a step. She attends school three days a week, and spends her days off in bed resting.
On Friday night, family and friends will gather for a fundraiser at Mount Pleasant Golf Club. The money raised will help adapt the Keirsteads' van so Sophea can travel in her wheelchair.
Sophea will sing a song either from Annie or The Little Mermaid. She hasn't decided. She'll wear a dress, "cool" shoes and her hair down with curls.
Carol and Cassandra Keirstead visited Cambodia in February 2000. The plan: visit orphanages with hopes of adopting a baby. No expectations, just hope.
One evening Cassandra was with a doctor friend. The phone rang. A village woman had dropped off a sick infant.
The baby's skull was deformed, probably because the caretakers never turned her over. She was filthy, maybe never even bathed.
"You could still see the birth coating," Cassandra says.
Cassandra still cuddled her.
Three months later, Hana Sophea Keirstead was lying in a crib on Branch Street.
The diagnosis at 13 months: "Failure to thrive." Sophea would never develop at the same rate as her peers.
At 14 months, family and friends gathered at her bedside "to say goodbye," Carol said.
Carol and Cassandra laid their heads next to Sophea, stroking her fine hair and asked her with a whisper to stay with them. Sophea opened her eyes and weakly nodded her head.
Carol is telling this story, and her voice grows soft. Cassandra silently looks on, head resting in her palm. Their two-story Victorian house with a maze of rooms is eerily quiet, except for the water boiling for the dinner. A voice interrupts from the second floor.
"Mom! I'm hungry!"
"That's her," Cassandra says.
This, too, is Sophea: She brings brie to school for snacks; she requests poached salmon for dinner; she prefers Brussels sprouts.
Danielle Bergeron of Lowell, Sophea's baby sitter, draws the blame for Sophea's "princess mentality."
"It's Danielle's job to break this Disney theme," jokes Cassandra. "She introduced her to the world of the princesses, so now Danielle can help her be the princess."
Bergeron began baby-sitting Sophea when Sophea was 3. She recalls their first meeting.
"I walked through the door and Sophea goes 'I like your sandals,' " Bergeron says.
They are a team. Which is why Danielle organized Rock for Sophea.
"The wedding is off," Sophea announces. "He married someone else. Everything is all set for my other boyfriend now."
She is sitting on her bed, playing with her stuffed dog, jet-black hair and big eyes twinkling behind her glasses.
"Duh -- I already dumped that one in the trash barrel," she giggles about her ex-fiancé.
A few hours ago, Sophea was finishing up a hospital stay, two days at Lowell General and three at Children's Hospital in Boston. At home, she never really escapes the hospital. There are machines with strange levers and buttons on the perimeter of her bedroom. The tube tethered to her from one of those machines continuously beeps. Sophea ignores the sound, and giggles like a high-school girl.
This kid with a big imagination and even bigger heart tends to draw smiles wherever she goes. The nurses at Children's Hospital always are delighted to see her.
"They say she is their favorite patient, but of course they don't want to see her in there," says Carol. "It's bittersweet."
She rehearsed with one and the other is coming over to practice soon. She has a tough decision: Who will meet her at the altar?
Her groom will have his hands full. Sophea has 25 children. She runs two businesses, a lollipop factory in Minnesota called "Sweet Lollipops" and a cupcake bakery simply called Cupcake Sophea.
Sophea is a 6-year-old with a wild imagination and weak muscles. She has congenital muscular dystrophy (CMD).
She swallows 16 pills daily, but needs a gastrotomy tube. She doesn't have enough strength to eat more than two bites of dinner. Sometimes she needs oxygen. The slightest cold can put her in a hospital bed.
"If we do an activity on Saturday, there is no way she can go to church on Sunday," says her mother, Carol Keirstead.
Fatigue is the thorn in her side. Sophea can walk for a short distance with a walker, defying the doctors who said she would never take a step. She attends school three days a week, and spends her days off in bed resting.
On Friday night, family and friends will gather for a fundraiser at Mount Pleasant Golf Club. The money raised will help adapt the Keirsteads' van so Sophea can travel in her wheelchair.
Sophea will sing a song either from Annie or The Little Mermaid. She hasn't decided. She'll wear a dress, "cool" shoes and her hair down with curls.
Carol and Cassandra Keirstead visited Cambodia in February 2000. The plan: visit orphanages with hopes of adopting a baby. No expectations, just hope.
One evening Cassandra was with a doctor friend. The phone rang. A village woman had dropped off a sick infant.
The baby's skull was deformed, probably because the caretakers never turned her over. She was filthy, maybe never even bathed.
"You could still see the birth coating," Cassandra says.
Cassandra still cuddled her.
Three months later, Hana Sophea Keirstead was lying in a crib on Branch Street.
The diagnosis at 13 months: "Failure to thrive." Sophea would never develop at the same rate as her peers.
At 14 months, family and friends gathered at her bedside "to say goodbye," Carol said.
Carol and Cassandra laid their heads next to Sophea, stroking her fine hair and asked her with a whisper to stay with them. Sophea opened her eyes and weakly nodded her head.
Carol is telling this story, and her voice grows soft. Cassandra silently looks on, head resting in her palm. Their two-story Victorian house with a maze of rooms is eerily quiet, except for the water boiling for the dinner. A voice interrupts from the second floor.
"Mom! I'm hungry!"
"That's her," Cassandra says.
This, too, is Sophea: She brings brie to school for snacks; she requests poached salmon for dinner; she prefers Brussels sprouts.
Danielle Bergeron of Lowell, Sophea's baby sitter, draws the blame for Sophea's "princess mentality."
"It's Danielle's job to break this Disney theme," jokes Cassandra. "She introduced her to the world of the princesses, so now Danielle can help her be the princess."
Bergeron began baby-sitting Sophea when Sophea was 3. She recalls their first meeting.
"I walked through the door and Sophea goes 'I like your sandals,' " Bergeron says.
They are a team. Which is why Danielle organized Rock for Sophea.
"The wedding is off," Sophea announces. "He married someone else. Everything is all set for my other boyfriend now."
She is sitting on her bed, playing with her stuffed dog, jet-black hair and big eyes twinkling behind her glasses.
"Duh -- I already dumped that one in the trash barrel," she giggles about her ex-fiancé.
A few hours ago, Sophea was finishing up a hospital stay, two days at Lowell General and three at Children's Hospital in Boston. At home, she never really escapes the hospital. There are machines with strange levers and buttons on the perimeter of her bedroom. The tube tethered to her from one of those machines continuously beeps. Sophea ignores the sound, and giggles like a high-school girl.
This kid with a big imagination and even bigger heart tends to draw smiles wherever she goes. The nurses at Children's Hospital always are delighted to see her.
"They say she is their favorite patient, but of course they don't want to see her in there," says Carol. "It's bittersweet."
3 comments:
I really favor genetic engineering of human being! Soon every child on Earth will born with a perfect God given image! I wish it would happen sooner!
Hanasophea is my best friend. I visit her often at home, in the hospital, and she went to my sleepover birthday party. I go to shool with her. Its troubling now because we have to go to different schools.
Mom I need you..I am sorry 6122492569
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