Imagine the day when you get to hold your baby for the very first time. Everyone wants to hear the doctor pronounce the baby “normal” and healthy.
For ORU student Olivia Melton, this was not the case.
When her son, Josiah, was born, she received news that any new mother would dread.
Josiah was not “normal.”
Olivia had to have an emergency C-section when Josiah weighed less than 4 pounds. He had no baby fat and was born with a cleft palate the size of a quarter. Her obstetrician and gynecologist assumed that his small size was due to a small umbilical cord.
Throughout her pregnancy, she had no indication that her son would be anything but normal. The doctors did not know that he would have an extremely rare combination of three diseases.
Josiah was diagnosed with Pierre Robin syndrome, Charcot-Marie-Tooth Disease, and an extremely rare mutation on the 2nd chromosome, so rare that it is not even named.
His mother calls it “Josiah’s syndrome.”
He spent the first six weeks of his life in the NICU at St. Francis Hospital in Tulsa. The physicians weren’t hopeful.
“We’ll just have to wait and see, but you should prepare yourself for a difficult journey,” a physician said.
Today, Josiah is 5 years old and has required considerable medical and therapeutic treatments since his birth.
Doctors said there was a possibility he may not see or hear, and may not be cognitive or mobile.
But due to his treatment, he has overcome incredible odds.
“I would have had a nervous meltdown if it weren’t for [Jesus and my family] being there for me through every twist and turn, surgery, and decision in our journey,” Olive said.
Since Josiah’s birth, they have seen a variety of specialists, ranging from a developmental pediatrician, neurologist, surgeons, endocrinologists and genetic counselors.
To date, Josiah has had nine surgeries, a feeding tube, eye muscle recess, and cleft palate repair, among others.
His treatment has included physical, occupational and speech therapies.
Josiah will continue with vigorous occupational and physical therapy, speech pathology and nutritional therapy.
He will also continue a daily respiratory routine, growth hormone therapy (by injection) and checkups with his many specialists.
Josiah has also received treatment at a local Tulsa facility called the Little Light House, a Christian organization founded by Marcia Mitchell.
According to the Little Light House, it is a place that provides “highly specialized education and therapeutic services in a Christ-centered environment to children with special needs.”
Unlike similar educational facilities, the Little Light House offers its services free of charge.
As a nonprofit that does not accept aid from the government or the United Way, the organization runs solely on corporate sponsorships and private donations.
If Olivia had to pay tuition for the care that Josiah receives, it would cost her more than $17,000 per year.
But because of The Little Light House, Josiah receives treatment free of charge.
“I just started my… practicum at the Little Light House and I absolutely love it,” said ORU student and Little Lighthouse volunteer Jessica Waite. “They are getting a wonderful education in a safe, loving environment that stimulates the love and excitement of learning. This school truly is a ministry and is a blessing that has impacted and transformed many special lives in the community.”
On Sept. 24, the Little Light House will host an annual fundraiser called Mini Laps, where all of the children who have received treatment can show off the progress they have made at the school.
Olivia and Josiah have a goal of raising $5,000 for the event.
As of Sept. 21, they had raised 62 percent of their goal.
They are accepting donations at https://sna.etapestry.com/fundraiser/TheLittleLighthouse/minilaps2011/individual.do?participationRef=468.0.4922485
“[Jesus] gave me a promise just a few hours before I had Josiah,” Olivia said. “Josiah is meant to be a miracle in our day that the glory of God may be seen in the earth... He is my miracle, and he will have his appointed day of total healing.”