Mikayla Sewell has had eight surgeries and she's only 9 years old.
Mikayla, daughter of Stacy Hayes of Union Township, and a third-grader at John Simatovich Elementary School, was born with congenital central hypoventilation syndrome, which requires she be on a ventilator during sleep, during seizures and when she becomes ill.
This is a lifelong disorder. During her first surgery they found she has Hirschsprung's disease, the nerve cells in her colon were dead and continue to die. She has also been diagnosed with bradycardia with dysrhythmia — slow and irregular heart beats.
"She has always been sick," said Hayes. "And when she was 1, her father died suddenly."
Hayes said this has all been a challenge for the family.
"We live with my parents now and I can't work because I have to take care of Mikayla," she said
Right now Mikayla has a tracheostomy tube and a ventilator. The family hopes to get a BiPap machine but with no backup battery for the new machine the family needs a whole house generator to keep her breathing if the power were to go out.
Once she has the BiPap she will lose her nursing hours and will need a service dog. All this takes a lot of time, effort and money.
Friends and family have gotten together and are planning a fundraiser for Mikayla's current and future needs.
The event is from noon to 8 p.m. Saturday at Pepe's Mexican Restaurant, 809 McCool Road, South Haven. There will be bands, DJ, beer garden, poker run, 50/50, silent auction, raffle, photo booth and vendor fair.
For information or to donate, call (219) 364-2551 or email info@MikaylasMission.org. All donations can be sent to Mikayla's Mission at 401 Sherman Drive, Valparaiso, IN 46385. Visit the website at MikaylasMission.org.
"This has been a challenge over the years," said Hayes. "My family has been a big support."
When Mikayla is feeling good she likes to do typical kid things like rollerskate, sports, jump rope and hula hoop.
"She is limited because of the trach but once she is better she hopes to do more things like swim."