When the candle was blown out at Dakotah’s first birthday party, a dark cloud hung over what should have been a happy, exciting milestone. The party itself looked different than most other celebrations: one-year-old Dakotah didn’t sit in a highchair, she sat in a wheelchair, and she couldn’t smear icing and cake on her face by herself, her mother had to feed her. But most of all, what weighed heavily on family and friends present at her birthday celebration, was the knowledge that she wasn’t expected to have another one.
When Dakotah was born she was perfectly normal, passed all her newborn exams with flying colors, took to breastfeeding and slept through the night. It was love at first sight for her mother and 6-year-old brother Nathan.
When she was two months old, her mother began to notice that Dakotah would make jerking movements, often in clusters, and she grew concerned. The doctor dismissed them as normal movements typical of an infant, but they persisted, so a week later Dakotah saw a different pediatrician. What had been casually called “normal infant movements” were in fact much more serious seizures, so she was admitted and subsequent tests were run. It was that night her mother heard for the first time the terrifying sentence that mothers everywhere fear: Dakotah’s results were “not good at all.”
She was rushed into immediate surgery to drain cysts in her brain. Dakotah did well in surgery, even though it was a lot for a tiny two month-old body, she proved to everyone— the surgeons, the doctors, her mother, and even herself: she was a fighter. Once she was stabilized and prescribed a regimen of seizure medications, a neuro-opthamologist found that she had colobomas (holes) in her retinas and near her optic nerve. She was diagnosed that day with a rare disorder called Aicardi Syndrome.
Aicardi affects only women and is extremely rare, seen in only 1 out of 150,000 newborns and only 4,000. It affects the tissue connecting the left and right halves of the brain and is often accompanied with recurrent seizures.
After receiving the grim diagnosis, the doctor went on to tell Dakotah’s mother that her daughter would experience severe developmental delays which would worsen with time. Then he dropped the bombshell. She would be lucky to see her 2nd birthday.
Dakotah has celebrated 16 birthdays since then.
But the 16 years of life Dakotah fought for have not been easy. She has endured more surgeries than most people accumulate in one lifetime, a craniotomy, a nissen fundoplication, an adenoidectomy, and a triple arthrodesis, to name a few. She has been fitted for feeding tubes, ear tubes, and a scoliosis brace. Her developmental delays are severe but not as severe as others with Aicardi. Dakotah struggles to communicate and can’t go to the bathroom, eat, or drink without assistance. But that’s not what her family focuses on, they focus on what she can do.
This is the story of Dakotah, the young rockstar…
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