Our daughter, Katie, is getting her wish granted by Make-A-Wish. Katie’s Nana referred her to MAW in June because over the past 3 years Katie’s health has declined tremendously.
We adopted Katie and her 3 sibling in 2009, when Katie was 6 years old. She was a Fetal Alcohol Syndrome baby born with a rare chromosome deletion called Kleefstra Syndrome. When we adopted her, she was developmentally delayed, had CP, and Scoliosis. She had trouble chewing food but was maintaining her weight.
In 2011, she started having seizures and by 2013 her life was completely different. She has a G-Tube, and Ileostomy because of her numerous G-I issues. She has Dysmotility of her entire G-I tract. We just continued to deal with all of Katie’s complex medical issues until….. July 22, 2015.
On July 22, 2015, we heard the words no parent wants to hear. The words, “ (Your child’s name) only has 3-5 years to live.” Katie’s organs are failing and her body can’t continue to support her growth or weight. As the doctor said, he does not hold the number of her days in his hand but only has to prepare us by what he knows to be true medically.
On August 6th, I received an email stating that Katie’s wish would be granted. On this day, tears of joy filled our eyes; since then, we have not focused on July 22nd. We are in full Make-A-Wish mode! Just this week I decided, I better get my Disney groove on or our children might run amuck at the happiest place on earth. Thus, why I am here on this board and thankful that I found it!
We adopted Katie and her 3 sibling in 2009, when Katie was 6 years old. She was a Fetal Alcohol Syndrome baby born with a rare chromosome deletion called Kleefstra Syndrome. When we adopted her, she was developmentally delayed, had CP, and Scoliosis. She had trouble chewing food but was maintaining her weight.
In 2011, she started having seizures and by 2013 her life was completely different. She has a G-Tube, and Ileostomy because of her numerous G-I issues. She has Dysmotility of her entire G-I tract. We just continued to deal with all of Katie’s complex medical issues until….. July 22, 2015.
On July 22, 2015, we heard the words no parent wants to hear. The words, “ (Your child’s name) only has 3-5 years to live.” Katie’s organs are failing and her body can’t continue to support her growth or weight. As the doctor said, he does not hold the number of her days in his hand but only has to prepare us by what he knows to be true medically.
On August 6th, I received an email stating that Katie’s wish would be granted. On this day, tears of joy filled our eyes; since then, we have not focused on July 22nd. We are in full Make-A-Wish mode! Just this week I decided, I better get my Disney groove on or our children might run amuck at the happiest place on earth. Thus, why I am here on this board and thankful that I found it!
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