Toddler is one of seven children globally diagnosed with rare disease after she was delivered prematurely because the mother had Covid pneumonia, mother wants to raise awareness to rare diseases in kids
Since the start of the Covid-19 pandemic, nearly 86 million Americans tested positive on the virus despite America having one of the highest vaccination rates so far. While we are currently in a period with stable daily number of cases, the 14-day average shows that the country still adds more than 100,000 new positive cases on a daily basis.
Currently, more than 259 million Americans are vaccinated with at least one dose against Covid-19, representing 78.1% of the population, which is among the highest vacation rates in the world. Despite providing decent protection against severe condition and death, many people, especially pregnant woman and breastfeeding mothers, are still vaccine hesitant because when the Covid-19 vaccines were authorized for emergency use, most of the pre-approval vaccine procedures were skipped.
However, health experts and CDC are constantly urging people to get vaccinated and protect themselves from the virus since the Covid-19 vaccination outweighs the known and potential risks. CDC further claims that pregnant woman should also get vaccinated against Covid-19 since vaccines are safe and effective, otherwise, mothers-to-be are exposed to pregnancy complications if they get sick with the virus.
More than a year ago, Michelle Wilkerson gave birth to her daughter Emi who was born prematurely because doctors at a local clinic thought that the baby was not receiving adequate oxygen since the mother had Covid pneumonia at the end of her pregnancy. In March last year, doctors delivered the baby six weeks early and that’s was the start of the emotional rollercoaster the mother still experiences.
Shortly after the baby was delivered, doctors at a Ga. based clinic diagnosed the baby with cerebral palsy. The mother, however, said something wasn’t right — Emi was misdiagnosed. Emi was taken to another hospital where she had her little feeding tube changed out to a permanent button.
“I felt like something was going on. I felt like she was having infantile spasms. And sure enough, when we went to get her tube changed out, I just told GI I thought she was having infantile spasms. He didn’t even look at the video, he admitted us,” Michelle said.
In the upcoming period, doctors conducted several different tests and the mother was told something no parent wants to hear: Emi was diagnosed with KIF1A, a severe and extremely rare neurodegenerative disorder. The mother was devastated, but she received a lot of support by parents of children with special needs.
Unfortunately, Emi was diagnosed with the E253k variant of KIF1A, the rarest variant and variant that is known as the one that results with the most serious forms of the disease. According to Michelle, Emi is one in just seven children living with this type of disease in the whole world. While most of the children don’t make it past 2 years old, Michelle was told about a child diagnosed with the same disease who is now over 5. Emi turned 1 in March and her closest family relatives are making the most of the time they have with her.
Michelle left her job and she is now fully dedicated in looking over Emi. She decided to share her story with the public few days ago in an effort to help parents who go through something like this and to raise awareness to rare diseases in kids.