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
“I noticed she was having developmental problems,”
At 12 months, when Sheri was still in a fetal infant stage,
At age 2, Sheri began having grand mall seizures and may have had small ones in her sleep.
“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,
“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,
“We took the article and Sheri back to her pediatrician and she had a blood test at
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,”
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,
“She is severely retarded, which is one of the conditions,”
But she does make pre-speech sounds, such as “mama” or “dada.”
“We communicate by pointing and making sounds,”
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,”
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,”
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,”
The disease was discovered in the 1960s by Dr. Angelman.
“There are less than 1,000 in the
In spite of the difficulties,
“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
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,
“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 firstname.lastname@example.org