ROANOKE | You can’t spend long in Leach Baker’s town house without feeling the profound love she has for her daughter, Ashton.
There’s the excited pitch you hear when Ms. Baker, 36, speaks to her. The twinkle in her eyes when she looks at her daughter.
Ashton, 18, has Down syndrome. She also is autistic. And this summer, Ms. Baker learned that Ashton suffers from early-onset Alzheimer’s disease. It is so rare in someone so young that her pediatrician says he’s never heard of such a case.
Ashton’s days are numbered. But Ms. Baker, a social worker and education coordinator for Children’s Trust of the Roanoke Valley, vows to pack as much as possible into the time her daughter has left.
“She’s my whole heart,” Ms. Baker said, alternating between laughter and tears. “Being a mom is the greatest thing I’ve ever done in my life.”
You might not guess it from Ms. Baker’s bubbly, slightly manic nature, but that life has been a not-so-splendid one.
A high-school romance in her native Oklahoma left Ms. Baker pregnant with Ashton at age 17.
The girl’s father, Ms. Baker said, took off nearly as soon as he realized he was the father of a Down syndrome child.
She met and married an Army enlisted man in Northern Virginia. They had a son, Cameron, now 14. And for a while, life was pretty good.
That marriage ended, Ms. Baker said, in January 2001 when her husband of 10 years told her he was unable to deal with the stress of having a child with special needs.
Ms. Baker borrowed $2,000 from her mother and did some quick research online about state colleges, public schools and affordable housing. She found a house to rent in Christiansburg and moved there.
Within six months, she was enrolled at Radford University so she could finish her social-work degree.
She was a 29-year-old single mom of two attending college, with a $7.50-per-hour job at a day care center. And then she was diagnosed with uterine cancer.
Surgery saved Ms. Baker’s life, and eight years later she remains cancer-free.
In 2005, shortly after her graduation, Ms. Baker moved to Roanoke and took a job at a nursing and rehabilitation home. She enrolled Ashton and Cameron in public schools.
Ashton’s disability never stopped her, or her mom, from making sure she lived a full and rich life.
Ashton walked, danced, sang and talked - a storm. She swam on the Northside High School swim team. After she transferred to Hidden Valley High School, where she’s now a senior, she attended the prom.
“She was fully independent,” Ms. Baker said.
Ashton loves flowers and decorating. Orange is her favorite color. She is an absolute junkie for anything that has to do with the Disney television character “Hannah Montana.”
Ashton never was entirely independent, of course. She has a state-funded aide, Amanda Peters, who helps her get up most mornings and who stays with her after school until Ms. Baker arrives home from work.
Ms. Baker began noticing changes last September.
Ashton was losing weight - 30 pounds in a few months. She was talking less, and seemed unusually fatigued. She had a lot of pain in her hips and also started having seizures, Ms. Baker said.
“She was pale, and lethargic,” Ms. Baker said. “She looked like a walking zombie. It wasn’t Ashton.”
Ms. Baker took Ashton to see her longtime pediatrician, Dr. David Berry, who couldn’t figure out what was wrong. Nor could several specialists that Ashton saw in the Roanoke Valley. Her mother ultimately consulted Duke University Medical Center in Durham, N.C.
There, Ashton was evaluated by a rheumatologist, then a gastroenterologist and a pediatric ophthalmologist. None of them could find anything.
Then it was on to Duke’s pediatric neurology department, which performed a 48-hour brain scan and yet another MRI.
“That’s when they told me she had progressive advanced early-onset Alzheimer’s,” Ms. Baker said. “I just cried.”
Dr. Berry said Alzheimer’s isn’t unheard of among people with Down syndrome. But when it strikes, they’re usually in their late 40s or 50s.
With people of Ashton’s age, “I don’t even know of any statistics for it, it’s so rare,” he said.
Ashton’s day-to-day living skills are declining quickly. She must wear diapers. She seldom speaks, and often she uses symbols on paper cards to communicate.
Sometimes her hands shake so badly she can’t feed herself.
If Ms. Baker knows how much time Ashton has left, she’s not saying. But she is determined to pack a lot of living into it, especially into the next few months.
The Children’s Miracle Network, an organization that grants wishes to dying children, has granted Ashton a wish: to meet Hannah Montana. But then she and Ms. Baker learned that Miley Cyrus, the actress who plays the character, isn’t granting wishes at this time.
Later this month the network will fly Ashton, Ms. Baker and Cameron (who recently moved to Texas to live with his dad) to California, where Ashton will meet the cast of another favorite TV show, “The Suite Life of Zack and Cody.”
Ms. Baker, meanwhile, hasn’t given up on a Hannah Montana meeting. She recently purchased front-row tickets to a Hannah Montana concert in Washington. And now she’s angling for a backstage pass.
“I always say, ‘You have to embrace life with grace,’ ” Ms. Baker said. “Life is to be lived, not just existed.
“I’m not ready to bury her yet.”
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