Madilyn's Medical Travel Fund
Donation protected
Madilyn is our miracle. She is our 3 1/2 year old medically complex granddaughter that my husband and I raise. Madilyn has Dandy-Walker Malformation (the majority of her cerebellum did not form, it is a fluid filled cyst), hydrocephalus (fluid on the brain) with a VP shunt, Turners Syndrome Mosaic, Complex X-chromosome abnormality (only one in the world), Retinopathy of Prematurity stage 5 which has left her completely blind in her left and legally blind in her right eye, infant/toddler feeding disorder (she has a GJ feeding tube that keeps her alive, it is her sole source of nourishment) as well as several other diagnosis.
Madilyn was born at 29 weeks weighing only 1lb 5.5 ounces. We were told we would never take her home and if we did she would be in a vegetative state for however long she lived. Well she's 3.5 years old now and thriving! She's learning to talk and walk and doing things none of her 10+ specialists ever thought she would do. She's absolutely amazing!
However, a huge portion of our lives is filled with medically necessary travel back and forth to see her specialists at our Children's Hospital almost 7 hours away from home. We average 11+ trips per year and 3 of them last year were by emergency medical flight. We often have inpatient stays as her GI tract randomly stops working or her VP shunt that regulates the fluid in her brain malfunctions requiring emergency brain surgery to repair. Madilyn also has sugar regulating issues and her sugar levels have dropped dangerously low (into coma/organ failure range) multiple times leading to extended inpatient stays.
Madilyn's medical travel expenses cost us thousands of dollars per year and we are a single income family living paycheck to paycheck as I stay home to give Madilyn the full-time one on one care she requires. We have been very blessed that her insurance has left us with minimal out of pocket expense for actual medical bills or much needed adaptive equipment but the travel expense is crazy. I always say we are one emergency medical trip away from bankruptcy.
Our community has been wonderful to us and we would greatly appreciate any help that we receive.
Love, Peace and Cures,
Kathy, Scott & Madilyn
Madilyn was born at 29 weeks weighing only 1lb 5.5 ounces. We were told we would never take her home and if we did she would be in a vegetative state for however long she lived. Well she's 3.5 years old now and thriving! She's learning to talk and walk and doing things none of her 10+ specialists ever thought she would do. She's absolutely amazing!
However, a huge portion of our lives is filled with medically necessary travel back and forth to see her specialists at our Children's Hospital almost 7 hours away from home. We average 11+ trips per year and 3 of them last year were by emergency medical flight. We often have inpatient stays as her GI tract randomly stops working or her VP shunt that regulates the fluid in her brain malfunctions requiring emergency brain surgery to repair. Madilyn also has sugar regulating issues and her sugar levels have dropped dangerously low (into coma/organ failure range) multiple times leading to extended inpatient stays.
Madilyn's medical travel expenses cost us thousands of dollars per year and we are a single income family living paycheck to paycheck as I stay home to give Madilyn the full-time one on one care she requires. We have been very blessed that her insurance has left us with minimal out of pocket expense for actual medical bills or much needed adaptive equipment but the travel expense is crazy. I always say we are one emergency medical trip away from bankruptcy.
Our community has been wonderful to us and we would greatly appreciate any help that we receive.
Love, Peace and Cures,
Kathy, Scott & Madilyn
Organizer
Kathy LaBonte
Organizer
Atlantic Mine, MI