Kenize was born with a rare metabolic disorder called Glutaric Acidemia type I. She is unable to process certain proteins and requires special metabolic formula to support her nutrition. A symptom of GA1 is chronic low appetite. Kenzie has had a consistent low appetite since birth and has required a feeding tube to support her nutrition throughout her life as well. It was discovered on an MRI when Kenzie was 15 months old- that she likely experienced a metabolic crisis in utero and had damage to her brain as a result of this event. This event caused permanent damage to her basil ganglia, which is responsible for body coordination and movement. Due to this brain damage, she experiences chorea dystonia that impacts her gross and fine motor skills significantly. Chorea dystonia is where her body experiences involuntary movements that prevent her from being able to stand or walk independently, write or eat with ease, and other self care and hygiene needs for which she needs ongoing support as well. We often tell people her condition is similar to cerebral palsy as that’s a condition many are familiar with. Although the conditions are very different in nature, the presentation has many similarities. She requires a wheelchair for her daily mobility and is able to access a walker and stander throughout the day at school to help support her ongoing physical growth and development.
Kenzie‘s temperament is very kind and loving. She rarely gets frustrated despite her everyday challenges. She is very bright and articulate and has become a good advocate for herself. She demonstrates patience when she’s unable to participate in certain activities and is the first to cheer on her sibling and friends when they are running or playing games. She has been able to participate in gym at school with her KidWalk and is always so thrilled to be included in the activities. She takes nothing for granted and has taught us all how important it is to appreciate the good things in life. She is very determined and when something is hard she says: “Never give up right? … never give up”. It’s become somewhat of a mantra for her when things are hard. Instead of getting discouraged by what she can’t do… she gets excited to try new things and is always smiling ear to ear to show us all what’s possible no matter how many times she falls trying!
When it was discovered Kenzie had brain damage on the MRI at 15 months old, we were told Kenzie would likely never walk/ talk/ or eat independently. We were devastated, yet year after year, she shocks and surprises us with what she’s able to do. She talks like crazy and we’ve been weaning her off the feeding tube in the last 6 months in hopes all of her nutrition can be done by mouth within the year 2021. We’re hopeful that with access to specialized equipment that allows her to be on her feet to strengthen her muscles/ coordination and balance she will be able to walk independently someday as well. A resource like this would allow Kenzie to participate in recreational activities that normally she wouldn’t be able to participate in- especially outside. She desperately wants to be active and have more independence, which will likely skyrocket her confidence and spirit to continue defying the odds.
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