World Down Syndrome Day

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World Down Syndrome Day

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This campaign is in honor of my niece, Blakelee, who was born with Down syndrome and an AV heart defect. In the end, she lost her 7-month fight against heart and lung disease. From the time she was born on January 30, 2018 to the time of her passing on September 7, 2018, she spent her entire life in NICU or CVICU. She spent her first 19 days in NICU at Germantown Methodist before being transferred to Le Bonheur Children's Hospital. She spent another 32 days in NICU at Le Bonheur before having heart surgery on March 22. The surgery was a success and she was moved to CVICU but that was only the beginning.

Blakelee spent the remaining 169 days of her life in CVICU on one hell of a roller coaster ride. The morning after her heart surgery, Blakelee coded. Doctors performed chest compressions on her for 56 minutes while the medical staff readied a life sustaining machine called ECMO. She was on the ECMO for five days but she continued to fight. She fought through pulmonary hypertension, acid reflex, a G-tube insertion, multiple infections, a heart catheter procedure, near-constant connection to a ventilator and pulmonary stenosis - a life-threatening heart and lung condition.

The families of the Down Syndrome Association of Memphis and the Mid-South (DSAM) organization were there with us from the beginning. My sister and I become close with several of the DSAM moms and they would come by and visit, check in on Blakelee and pray for my family and I. We will never be able to show how much we appreciated their prayers and concerns. They became our second family. So, I thought raising money for DSAM would be the best way to show our appreciation and love for the organization. I want to help DSAM continue their mission of promoting inclusion and empowering individuals with Down syndrome and their families. 

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Photo credit goes to Caroline Johnson

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