Myiah needs a miracle
A 3-year-old girl continues to lose the basic abilities other toddlers find instinctive
Heidi Lowry's life began again one day in mid-April 2010, when her husband, Brian, unemployed at that time, called his wife at work with the bad news.
One of the Estacada couple's three children - their 18-month-old daughter - had been diagnosed with Rett syndrome, a regressive brain disorder that robs a young girl of what she has learned in life's early stages.
'When Brian called and gave me the news, I thought my world was ending,' Heidi said. 'It felt like a huge mental earthquake.'
Soon after that diagnosis, when she would go shopping or walk around town, Heidi would see young children and start crying.
She would see normally developed children and think of her daughter, Myiah, who can't walk normally or speak or hold a ball in her hand or sleep at night or feed herself or perform many other simple skills.
'When I would see a mother talking to her child on the phone, I would start crying,' she said. 'I wondered, 'How am I ever going to talk to my daughter on the phone?' '
What is Rett syndrome?
The International Rett Syndrome Foundation describes the symptoms as a girl afflicted with epilepsy, cerebral palsy and autism - all at the same time.
They're called silent angels because they can't talk, and when they die people say angels are getting their wings.
Myiah often vomits because her digestive system doesn't work well. One night, she vomited in her sleep while she was lying on her back, causing her to gag because she was unable to turn herself over.
Her dad heard what he called a 'weird sound' through the 'Myiah cam' in her bedroom and went to investigate. He quickly rolled her over and cleared her throat so she could breathe again.
That's an example of just one of the many close calls for any family with a girl who has Rett syndrome.
Boys with Rett syndrome either are stillborn or die soon after birth, but girls will live through a frustrated and reduced-quality life.
Some girls have seizures, some just hold their breath indefinitely, and some go into screaming fits for hours - and neither parent has a clue about her problem and no ability to stop the crying.
One day last week, Myiah screamed violently for two hours, and her mother was unable to calm her.
'All I could do was just pray. 'Lord, either give her the words to tell me what's wrong or help me understand what she needs right now,' ' Heidi said.
Since the toddler doesn't sleep much at night - only about three hours in any 24-hour period - her parents have to take shifts and stay up all night to monitor what she's doing.
'We say (to ourselves) that she's throwing parties,' Heidi said. 'She will just pull all-nighters. She'll be awake from 5 p.m. to 4 a.m.'
Nothing is predictable with Rett syndrome. Therapists have told the Lowrys that what has worked well for them one day will have no effect the next day.
'After what seems like a perfect day with Myiah,' her mother said, 'the next day she might be throwing up; she might be throwing a fit; and she might be not sleeping; you don't know what to expect.'
Two simple words
Myiah has limited control of her walking because she has distance perception and balance issues. Sometimes she'll fall down, fall against a wall or walk into objects.
The only change in her lack of speech happened a few months ago, when Brian was running a video of Myiah on her rocking horse, and he casually said to her, 'Say hi mom.'
Myiah dutifully repeated, 'Hi mom.'
'As plain as day,' he said. 'But that was the only time.'
'I couldn't stop crying when I heard that,' Heidi said.
To improve the quality of Myiah's nutrition, Brian mixes high-protein liquid with her goat's milk. She's lactose and gluten intolerant and can't drink cow's milk.
Brian has been employed for about a week after being without a job for a year. Heidi is employed but on maternity leave from her job after the birth a couple of months ago of daughter Khloe. They also have a 9-year-old son, Dustin.
Health insurance covers a small portion of Myiah's expenses, but doesn't cover the cost of therapists. That's why a Sandy girl is conducting a fundraiser.
Rett syndrome was misdiagnosed for many years, and generally understood by the 1980s. It had been called SIDS when doctors couldn't explain the symptoms or prescribe a treatment.
'The autonomic nervous system isn't working correctly,' Heidi said. 'They'll stop breathing or have rapid breathing or develop an instant fever or chills.'
Diagnosis is through a process of elimination, she said. If a doctor recognizes symptoms as similar to Rett syndrome, a blood test will give a definitive diagnosis.
'But we went through test after test after test, trying to rule out other things first,' Heidi said.
Search for a cure
Rett syndrome isn't hereditary, even though it's a genetic disorder. Instead, it's something that happens spontaneously during conception.
The only treatments are therapies to assist in the re-learning of normally innate abilities. Among the therapies used are physical, occupational, speech, music, behavioral and hippotherapy (riding a horse).
'For example,' Heidi said, 'Myiah used to be able to finger-feed Cheerios, but she lost her 'pincher' skills. So now we have a therapist working with her trying to teach her that movement.'
Research is continuing, Heidi said, with one drug in clinical trials and three others going into trials over the next three years. Some of those, she said, would just treat symptoms - not offer a cure.
Scientists were able to reverse Rett syndrome in mice in 2007, and that gives the Lowrys and others hope that they might find a way to reverse it in humans.
While the Lowrys wait for a cure for Rett syndrome for all the other girls, they are praying for a cure for Myiah.
Heidi said she and Brian can't do anything or go anywhere without worrying about what Myiah's going to get into or how she could hurt herself.
But there's a positive side.
'It's a big task to care for Myiah, but it's enjoyable,' she said. 'Life is full of so many struggles, but then you have moments of pure joy.'
In a mother's heart, her daughter is a gift that keeps on giving - no matter the circumstances.
'Myiah is a strong and determined, beautiful little girl,' Heidi said, 'full of life, energy and smiles - truly a blessing from God.'