March for Babies
West Michigan - Grand Rapids
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Millenium Park
1400 Maynard Ave SW , Walker, MI 49534
Date: Saturday, May 05, 2018 10:30 AM
1400 Maynard Ave SW , Walker, MI 49534
Date: Saturday, May 05, 2018 10:30 AM
Our ambassador
Sammy Satkoski
Sammy Satkoski
In 2016, Mackenzie Satkoski had a smooth labor and delivery of Sammy, a 7lbs 14oz. baby boy. As standard, he was administered the newborn screening heal prick. Mark and Mackenzie vividly remember the nurse saying, "this is for the testing for very rare diseases, you'll never hear from us again."
They were excited when they took Sammy home. However, a phone call from the Pediatrician's office days later would change their world. The on-call doctor sounded very nervous and said he was calling to inform them that Sammy tested positive for a very serious and potentially very dangerous genetic disorder Medium chain acyl-CoA dehydrogenase deficiency called "MCAD" for short.
After seven long days, they reported to Helen DeVos Children's Hospital with Sammy for further testing, which included bloodwork and a urinalysis. A few days later Mark and Mackenzie received an emergency phone call that Sammy's lab results were back and in addition to MCAD indicators, other items in his labs were abnormally high which could mean liver and heart failure. In a panic, they headed back to the hospital with Sammy for immediate lab work. This time, they were instructed to stay at the hospital until the results were read in case levels were still abnormal and Sammy needed to be admitted. After waiting for results, they got the news to go home, as it did not appear Sammy's vital organs were in trouble.
Sammy's results were very rare and had the doctors scratching their heads. As a result, Sammy had to do more labs, more pokes for bloodwork and a urine sample. In addition to the panels and full urinalysis, they were sending his bloodwork off for full DNA testing which could take weeks or months. Four and half months later, Mark and Mackenzie received another call but with much better news. Sammy did NOT have MCAD. He is likely a carrier of MCAD but was a definitive carrier of an even more serious genetic disorder, MADD Multiple acyl-coA Dehydrogenation Deficiency. Since Sammy is just a carrier he could adjust to a "normal" life. However, later in life Sammy will need to go through genetic counseling with his future spouse. This is to ensure his wife is not also a carrier as the risk of having a child with the disease may be too high.
The disorders Sammy carries has only been studied in recent years and only became part of the newborn screening panel less than ten years ago. Mark and Mackenzie are so thankful Sammy received the newborn screening that included testing for these serious genetic disorders. "We will make sure Sammy is aware of his condition and takes advantage of early pregnancy screening or genetic counseling." stated Mackenzie. "We did not know about these genetic disorders and had never taken part of early pregnancy screening or any genetic counseling ourselves."
Over the last decade, March of Dimes volunteers have advocated for additional newborn screenings to be added to Michigan newborn panel. Screening for MCAD was added in 2003. Currently, Michigan screens for 56 of diseases and disorders at birth knowing that immediate treatments and interventions can save lives. Through efforts like this more children can lead a healthy life.
National partners
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