Friday, May 25, 2007

A mother’s love knows no bounds

Publish Date: 5/12/2007

A mother’s love knows no bounds

Being a mother is exciting.

But sometimes it can be hard, especially when the child has a rare disease.

Janet Trujillo’s journey with her daughter, Sheri Lynn, began 28 years ago.

At first, she didn’t notice the baby’s problems, but at 6-months old Trujillo knew something was wrong.

“I noticed she was having developmental problems,” Trujillo said. “She wasn’t lifting her head, rolling over, crawling or any of the normal developmental phases.”

At 12 months, when Sheri was still in a fetal infant stage, Trujillo took her to the pediatrician, who sent them to a neurologist, but he had no idea what was wrong.

At age 2, Sheri began having grand mall seizures and may have had small ones in her sleep. Trujillo said the hardest part was dealing with the sleep disorder.

“The younger children only sleep two hours over a 24-hour period,” she said. “Sheri was about 8 when she started sleeping six hours a night, and now she’s up to eight hours on a good night.”

Because of this, Trujillo and her husband, Joe, had to work and sleep in shifts because Sheri was so active and screamed because she didn’t want to be alone.

“It was a very frightening stage because she didn’t know what was going on,” she said. “The doctors didn’t either. They said some kind of neurological damage, some kind of severe retardation, some type of seizure problem, but they didn’t know.”

When Sheri was 12, Trujillo was given a magazine article describing the symptoms of what could have been Sheri’s double.

“We took the article and Sheri back to her pediatrician and she had a blood test at Stanford University. They confirmed that she had this chromosome No. 15 deletion,” Trujillo said. “Sheri was born with a genetic disorder called Angelman Syndrome.”

The disease is when a chromosome actually has been deleted. People are born with hundreds of matching pairs of X and Y chromosomes, but when one of them is missing, it causes this condition.

“There are 23 characteristics of Angelman’s,” Trujillo said. “Sheri is atypical. She has all of the conditions. Most individuals only have eight to 10 of the features.”

Over the years, she had seizures and was treated for that, had surgery to correct her lazy eye and spinal fusions to help the scoliosis, Trujillo said.

“She is severely retarded, which is one of the conditions,” Trujillo said. “She has an understanding comprehension of a 3-year-old. She’s nonverbal and cannot speak.”

But she does make pre-speech sounds, such as “mama” or “dada.”

“We communicate by pointing and making sounds,” Trujillo said. “We have a language that only she and I can understand and a few caretakers.”

Angelman Syndrome has become known as the Puppet syndrome because children, who are diagnosed with it, “walk on their toes with their hands in the air trying to hold their balance,” Trujillo said. “They look like puppets on strings, marionettes.”

People with the syndrome have similar characteristics, no matter what their race.

“They all have a round flat face and a flat back of their skull,” Trujillo said. “They all look like they’re related.”

It wasn’t easy when the neurologist saw her once, evaluated her and suggested she be sent to a state institution.

“He said she was hopeless. We should forget about her and start a new family,” Trujillo said. “We decided to keep her at home. I grew up in a medical background family. My husband did, too, and we decided this gentleman just didn’t know what he was talking about even though he was the head of Children’s Hospital in Oakland, Calif.

The disease was discovered in the 1960s by Dr. Angelman.

“There are less than 1,000 in the United States,” Trujillo said.

In spite of the difficulties, Trujillo said she loves her daughter just the same.

“It’s one of those tough love things when you have to lay down ground rules for her safety,” she said.

Sheri likes to go to the malls and see people. When Trujillo is at home, Sheri enjoys helping her make cookies, color while Trujillo creates crafts and spending one-on-one time with each other while communicating without saying a word.

Sheri is enrolled in a daycare program at Starpoint four days a week 48 hours a week with a caretaker, “so I can continue to do my community service and work she’s a full-time resident at home.”

And this Mother’s Day, Trujillo will celebrate it at home with her daughter, Sheri.

“She’s our social butterfly, she said. “You meet Sheri, and she falls in love with you, and you fall in love with her. She’s very warm and loving.”

Charlotte Burrous can be reached at

No comments: