Maizey's Journey through Canavan Disease

Everyone please meet our little Maizey. Maizey is 4 years old, and she was diagnosed with Canavan Disease at 5 months old. Canavan Disease is a progressive, neurological disorder that begins in infancy. It is caused by an inherited genetic abnormality: the lack of an essential enzyme causes deterioration of the white matter in the brain, which prevents the proper transmission of nerve signals. Symptoms of this disease can vary, but generally include a rapidly increasing head circumference, lack of head control, reduced visual responsiveness and a abnormal muscle tone such as stiffness or floppiness. Maizey will never get the chance to crawl, walk, sit, or even talk. Over time they may suffer seizures, become paralyzed, developmentally delayed, become blind, and have trouble swallowing. Deafness may also be a result. Many children with this disease do not live past the age of 10. At this present time there is no cure, treatment is just making her comfortable.

Maizey, has lost all ability to eat or drink anything by mouth, because she aspirates on everything. She has a GJtube all her feeds and meds go through the jejunal. Maizey is also farsighted and has astigmatism on both eyes.

Maizey is also on a bunch of different meds, things for pain, spasticity, seizures, drooling, secretions, acid reflux, probiotic, and melatonin. She also has her respiratory treatments which includes, nebulizers or inhalers, suctioning (oral, through the nose, and deep suction), shaker vest. These things get done everyday twice a day sometimes more.

Maizey can't speak the way we do, but sure likes to babble. She is very vocal. She laughs and smiles. She is always so very happy! She can talk with her eyes and acknowledges everything you say. And she also has a way to demand things she wants haha.

Maizey has had many different surgeries and procedures done from regular MRIs to her most recent one getting her tonsils and adenoids taken out and widening her airway to help her be less obstructive. She's had many hospital stays with done back to back.

Please keep our little Maizey in your prayers. We would greatly appreciate any donations, as this will help with medical expenses, gas to get back and forth to her frequent appointments that are an hour and a half away, and to any medicines and equipment that she may need that insurance will not cover.

#MaizeysJourney #CanavanDisease #Love #prayers #owlalwaysloveyou