October 2018 I saved Alice from a not so good situation
August 2020 Alice’s adoptive father and I adopted Alice who was a happy typical child and made great progress with her speech, totally potty trained, fastest tricycle rider ever and loved to laugh and get a rise out of whoever she could, even if it was fake (still does)
On July 16,2021 Alice was diagnosed with a terminal disease called Metachromatic Leukodystrophy. Metachromatic leukodystrophy is a progressive neurodegenerative terminal disease. In less than 1 year of her diagnosis, Alice lost the ability to walk, talk, eat, swallow, hold her head up and more. Alice requires 24/7 care, but luckily still sleeps through the night most nights. She has a feeding tube for nutrition. She uses multiple machines for respiratory care such as a shaky vest, suction machine, nebulizer and soon will require a cough assist machine. She takes several medications daily to help control her muscle spasticity, tone, nerve pain and all over comfort.

I have just recently started to reach out to foundations to assist with the cost of having our bathroom remodeled to make bathing her easier and safer as she is getting heavier and heavier by the day. Her needs are ever changing, and it gets harder and harder to "adapt and move on". Alice has an in-home nurse that cares for her while i work. Her schedule daily consists of care every hour to ensure she’s fed, receives her medications, adheres to her preventative respiratory routine, and is repositioned to avoid skin breakdown and pressure sores. She is basically a 8-year-old newborn baby with the sense of humor of a 13-year-old boy.

 With all that being said- I have reached out to Hunters Hope Foundation to help assist with the cost of having our bathroom remodeled and they said they would match every dollar raised by this fundraiser! Please help if you can!

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