My cousin and his amazing wife welcomed their second daughter Madison into the world last November. She had a lot of breathing problems from the beginning and was ultimately diagnosed with campomelic dysplasia, a rare genetic disorder that is usually fatal before age 1.
Madison had been home for a while before she was readmitted to the hospital about a week ago and was then moved to a beautiful pediatric hospice facility called George Mark Children's House. It's the kind of place I'd like to work at some day when I become a nurse.
Here is a video of her and her older sister Makayla right before she went back in the hospital...
After 2 1/2 months of cherishing every moment and pouring their hearts into their family, they said farewell to precious little Madison this morning. She passed away in her mother's arms, surrounded by her father and brave big sister.
As the second major tragedy to affect my father's side of the family in less than a year, this one hit everyone hard.
But the love and strength of my family take my breath away. We are truly blessed to have each other...
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2 comments:
I have lost a daughter too due to Campomelic Dysplasia. She died a day after birth. Hugs to you and your family.
You are welcome to join other parents who have loss their child due to Campomelic Dysplasia at
http://dailystrength.org/groups/campomelicangels
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