Katie suffers from an inherent condition called Aicardi Syndrome. With this neurological disorder, the structures connecting the two sides of her brain are missing leading to brain malformation and malfunction.
Aicardi usually affects the whole brain but in Katie’s case it was concentrated on the right side.
Her parents from Portland, Oregon noticed there was something wrong with their baby when she began having short spasms at just a month old. Initially doctors thought it was normal, but the Verdecchia’s took her to the hospital when the spasms became regular.
Tests revealed that Katie was suffering from the disorder that is so rare it only affects about 500 people in the world.
Undeterred by the constant hospital rounds, Katie began to grow as a lovable child. In May her mother wrote in her blog,
“Despite setbacks with her health, Katie has continued to grow and learn. She is most people would term the ‘cruiser’ stage of toddlers and moves very quickly now. Her personality continues to grow as well and she responds so much better to toys and people. More eye contact and giggles and laughter.’
However, at the end of August they learned that their daughter was having continuous seizures 24 hours a day and it could turn fatal. It is then that they agreed for the surgery that would maybe lead to a normal life for Katie and reduce drastically the risk of sudden death.
‘This surgery gives us a chance at life, and a longer one for our daughter.’ Said mother Maryalicia.
Within 72 hours of the operation, Katie’s seizures had stopped. Doctors also hoped that because most of her learning had been through the left part of the brain, she would recover quickly. That is what Katie proved by beginning to walk just 2 weeks after her surgery.
Maryalicia said, “She is standing alone and unassisted for 1-2 minutes at a time. She is bending over to play with toys and gotten herself off the floor once with pulling herself up on something. She can also now, turn on her iPad, unlock it, AND pick apps to play.”
She also notices that Katie is smiling more, focusing more and is hopeful that she will soon learn to speak.
According to Dr. Mathern,
Kids with Aicardi’s generally already have speech problems. In this case the left side of her brain, which is usually used for language, is still there. All we can do it wait and see what develops.”
Her mother adds,
“The doctors are very optimistic for her. They say to give her two months post surgery to heal physically and one year to see her potential. Based on other children’s progress we are dreaming new dreams!’
‘I stay positive because attitudes are contagious. You have to be strong for your children.’ She rightly concludes.
– Atula, Staff Writer
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