LL girl receives a gift of a lifetime
A little Los Lunas girl’s dream bedroom came true last week when Special Spaces Albuquerque gave 6-year-old Jentye Ramos a bedroom makeover.
Special Spaces Albuquerque is a non-profit organization funded by donations that create dream bedrooms for children suffering with life-threatening illnesses.
Jentye was referred for a bedroom makeover by Rebecca Armstrong, director of the Presbyterian Children’s Center, while Jentye was in recovery from surgery.
Jentye had been diagnosed with myositis ossificans, and a surgery removed a benign tumor the size of an egg from her spine.
The child was also chosen as Hero of the Month because she has endured so much, said Armstrong.
“Despite hospitalizations, she strives for normalcy as a child, and as a family member,” Armstrong said. “I attribute this ability to her parents — how they’re bringing her up.”
Remarkable for a family that has been consumed with doctor appointments and hospitalizations since the girl’s mother, Samar Ramos, was pregnant with her, when during a routine ultrasound it was discovered the baby, Jentye, had only one kidney.
Samar’s labor had to be induced when Jentye’s kidney became infected.
“So, as soon as she was born, they had to send her to NICU (Neonatal Intensive Care Unit) to get her treated right away,” Samar said. “They found out she had grade five upper reflex, which is the worst thing you can have with your kidneys.”
Jentye’s kidney was also not operating normally, and surgery was needed to correct the problem.
“She spent Thanksgiving in there, she spent Christmas in there,” Samar said. “She got out the day before New Year’s. It was pretty difficult.”
Then, a couple of years ago, Jentye started to have seizures.
“I didn’t know what was going on because I had never seen a seizure before,” Samar said.
She and her husband, Henry, took Jentye to the doctor, but they were told just to keep an eye on her because they didn’t find anything wrong.
Jentye had another seizure at Walmart that lasted about 30 minutes, Samar said.
“I called the paramedics at the clinic and they rushed her to the hospital,” she said.
The attendants got Jentye calmed down, and made an appointment for a brain scan.
Samar wanted the brain scan right then and there, but they sent her home with medicine to control Jentye’s seizures until the brain scan appointment.
It wasn’t long before Jentye had another seizure, and the medicine to stop it didn’t work, Samar said.
Jentye’s eyes were rolling back, and her body had gone rigid. The child was rushed to the hospital yet again.
When the medical staff pulled out an electric defibrillator, Samar was horrified.
“I asked what’s that machine for,” she said in tears. “They told me my daughter’s going to be OK, but I was like, ‘Why do you have that machine?’ They said they had to shock her, because she’s already been in the seizure for a very long time.”
Jentye was unresponsive and didn’t speak until five hours later.
“I was very worried my daughter wouldn’t ever talk again,” Samar said.
Finding the proper medication to control the seizures was an issue because some of the common seizure medicine was too much for one kidney, or the side effects with medicines, such as Depakote, were too risky for a child.
Jentye has lost a lot of time from school, and her young parents have worked hard to maintain their jobs.
All three of the Ramos’ children have asthma, and Jentye has had one medical crisis after another.
The bedroom makeover was a blessing for the whole family, Samar said.
It was designed by interior decorator Trina Dunbar to reflect Jentye’s favorite colors, musical artists Nicki Minaj and Lady Gaga, her Monster High dolls and the television shows she likes.
She shares her bedroom with her 3-year-old sister, Neveah.
“Woo ahh,” Jentye screams in delight when she sees her remade bedroom. “Mom, look at my poster!”
The room is freshly painted and the girls’ names have been airbrushed by artist Chris “CJ” Vasquez in a wispy design with birds and butterflies above their brand new twin beds.
A lamp with a Monster High lamp shade sits atop a brand new dresser drawer, and pretty curtains drape from the window.
Little round mirrors framed in daisy petals have been hung by the girls’ closet, and book shelves have been mounted over a second dresser drawer where a new flat screen TV has been placed.
The airbrush artist also painted special T-shirts for them.
The family is overwhelmed, and Samar tries to hold back tears.
“They did an awesome job,” she said, looking around. “This is wonderful — it’s beautiful.”
“Mommie, look, I have my own TV,” Jentye raves.
She dashes around her room marveling at all the new furniture and features.
The family was also gifted with five free passes to Explora in Albuquerque.
The national Special Spaces program was founded in 2004 to help make the bedrooms of children with chronic illness extra special since they spend a lot of time there. The idea is for the space to be a place of peace, comfort, hope and inspiration.
The Albuquerque chapter was founded by Jan and Paul DeMaggio about two years ago. Jan DeMaggio works closely with Rebecca Armstrong from the children’s center.
“We get quite a few of our referrals from there, Jentye being one of them,” DeMaggio said.
All of the furniture, appliances, paint and other supplies are donated from local businesses and individuals.
The redecorating is done by volunteers, and some volunteers donate money as well as their time.
DeMaggio had nine local volunteers, and 12 pre-medical student volunteers from Vanderbilt University on their spring break.
“If somebody wants to sponsor a room, we give their employees or the members of their organization an opportunity to come and work with us,” DeMaggio said. “It’s a very rewarding experience, and then to see the child’s reaction at the end of the day.”
To volunteer or make donations to Special Spaces Albuquerque, contact Jan DeMaggio at 291-8432, or email SpecialSpacesabq@comcast.net or visit www.SpecialSpacesAlbuquerque.org.
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