In 1994 at four years of age, my daughter Julia suffered a Grand Mal seizure leading to the rapid loss of her mobility and ability to swallow. This required the insertion of a gastrointestinal tube for direct feeding into her stomach as she can no longer have food in her mouth due to the risk of choking and aspiration. She was forced onto a liquid diet for the rest of her life and she will never enjoy the taste of food or drinks. The increasing seizures caused brain damage during her developmental years. Julia requires around the clock care so I often have to pay out of pocket for a caregiver so that I can work a full time job as a single mom trying to afford the costs we all face to provide a stable home. Julia also had to have metal plates inserted over her hip joints to prevent constant dislocation and immense pain, a physiological result of being unable to walk.
In 1999, Julia suffered a broken femur bone due to improper lifting techniques after being lifted out of her wheelchair by a school aid. Given Julia is non-verbal she can not communicate her needs which is a pain that any parent will always find incredibly hard to bare as I can’t even ask if she is in less or more pain or if she is wanting to go back to a doctor for more help. Since Julia’s birth, I have had to constantly defend her against the insurance companies who continually try to deny her coverage. In one year alone Julia had to undergo 11 surgeries to keep her alive. These are just some of the events that our family endured.
Our goal at Disolve is to provide all this information to families that have no idea how to manage the life changing circumstances that can occur without notice in each or our lives.
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