Reagan Harper Sinkiewicz was born December 29, 2012 and passed away peacefully, in her sleep, on September 17th, 2017. We appreciate your love and support these last four years. We are mourning the loss of our beautiful daughter but comforted by the lives she touched. In the future we will be setting up a scholarship fund in her name. We will publicize that when appropriate. Fly high my beautiful Reagan darling.
Her SMA Story: A few months after her birth, we began to notice some irregularities in Reagan. While other infants her age were eating well, gaining weight, and learning to use their developing muscles, Reagan had trouble eating, had difficulty gaining weight, and was unable to hold her head, move her limbs, and overall appeared fragile for her age.
After a routine trip to the pediatrician highlighted these abnormalities, a series of tests were ordered. Weeks went by and test after test came back negative. Finally, we had a referral to neurologist for more extensive testing. He suggested a test for a condition known as Spinal Muscular Atrophy (SMA). After reading up on it, we hoped and prayed that the results would turn out negative. Miraculously this specific neurologist said she did not have SMA...or so we thought.
After this diagnosis, we were referred to another hospital with more specialists. They took one look at Reagan and immediately ordered a test for SMA. We were confused by this. Hadn't she just tested negative for this genetic condition? Two weeks later the results were in. Reagan, our beautiful baby girl, had Type 1 Spinal Muscular Atrophy. We were crushed by the diagnosis. Come to find out, SMA comes in several forms and Reagan was originally tested for the rarest form of SMA...a condition known as SMARD--SMA with Respiratory Distress. Our joy that she didn't have this condition was now turned to the painful realization that our baby girl had just been given a short time to live.
Type 1 SMA is a severe genetic condition that causes an infant to slowly atrophy. Most infants with this condition show low muscle tone early in life and slowly lose whatever skills they have attained. This was a scary time for us. Most children with Type 1 SMA do not live past their second birthdays. To date there is no cure but a treatment option could soon be a reality.
Reagan became ill with the common cold in 2015 and she had to have an emergency tracheotomy. She coded twice while in the PICU and it was one of the scariest moments in our lives. She was in the PICU for almost a month before we could bring her home. Reagan currently enjoys her home in the foothills. She is surrounded by nature and love.
SMA is the number one genetic killer of infants, and one in forty people carry the recessive gene that causes this disease.
You can follow Reagan's fight and become one of her warriors by clicking on her Facebook page below.
Thank you and God Bless you and your families.
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