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Fight rare neuro-immune disorders. Together.
On February 8 2016, my two-year-old daughter Kayla suddenly became weak and lost use of her arms and legs within a matter of 15 minutes. She was not ill and had no symptoms prior to falling down and becoming limp. We took her to the ER where they did different tests and then transferred us to another hospital an hour away. They did an MRI and that is when they diagnosed her with Acute Flaccid Myelitis (AFM). It took a few days as they wanted to rule out any other possible causes but seemed to know what it was the first day we were there and they did the MRI.
Her condition deteriorated over the next month requiring intubation and a ventilator. Kayla then had a trach put in as well as a feeding tube. She was like a newborn baby needing support on her head and body when being carried. Her bladder function was affected as well requiring us to catheterize her four times a day to protect her kidneys which were found to have fluid in them. She spent three months in the PICU.
We have been home now with her for close to five months. She is a quadriplegic, unable to sit, stand, or walk. She has had some improvements. She has not used the ventilator for two months now and we are going to be removing the trach next week and hopefully she will prove that she doesn’t need it. She has been cleared to eat by mouth but she is not interested so that has been a struggle. Her neck control is stronger now and she can move her shoulders.
My two-year-old daughter can no longer run or play like a toddler should be doing. It is so hard to see her just sit there and not be able to play with other kids. She was just beginning her independence and now that has been taken away. She can’t even put her own binky in her mouth. It hurts. I just want to walk out the door to go somewhere with her following behind instead of being carried out the door. I want our life to be normal again.
My hope is that she will be one of the success stories. That one day she will be able to walk, write and play again. But we just don’t know. No one knows, not even the doctors. We will support Kayla and love her no matter what and give her the tools for success whatever that may be.
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