SAN ANTONIO – A McAllen family is desperate for a cure, but hopeful their strong little girl’s journey through a rare disorder will write the medical books for the future.
Named after the King of Rock and Roll, Presley Michelle Callaway was diagnosed with Pontocerebellar Hypoplasia Type 6, which is so rare that she is one of 32 cases in the world and the only case in Texas.
“She has two lesions in the middle of her brain in the back that cause her to have all of these seizures and not be able to see,” said Derek Callaway, her father. “She has no muscle tone. She’s basically like a brand new baby. She has to lie down like a little butterfly, but it’s comfy for her.”
He said this painful journey started when they noticed something was wrong when Presley was two months old.
“Her mother and I started noticing things like this when she was an infant and then at four months, we decided to go to the doctor and they said she was having seizures,” he said. “Then her mother told them, as she spoke, Presley would not look her in the eyes, and so they tested that and found that she was blind.”
Presley has upwards of 200 seizures a day and is 100% dependent on her parents, oxygen tanks and machines.
Derek said the only thing they could do as a family was stay faithful.
“God doesn’t give us a challenge we can’t handle,” he said. “We keep running into dead ends of people expertise. We contacted doctors that came up with the name, and their replies were grim. They said she will be the only one diagnosed with this in Texas. She is the 32nd in the world. We don’t have a lot of literature about this. They told us to please advocate about what we are doing because there is no textbook about this. She is writing the book as she goes. We just know, out of the 11 types of this disorder, hers is terminal,” he said as he got emotional. “He said there is nothing they could do for her.”
Fortunately, the family was able to find University Health, which offers palliative care Presley needs to continue living as best as she can.
It is the family’s seventh hospital, but they said Presley has been the strongest fighter through it all.
“They told us she wouldn’t see six months old,” he said. “She is two now. With the good lord’s love and faith and our strength in him. Hopefully, other families facing this will reach out to us so we can learn from each other to help advocate for these children who can’t speak fort themselves.”
The family has faced several obstacles while on this journey to finding a cure.
“Hardships have been very difficult,” he said. “There are several things she has to have to be mobile. Wheelchairs and carseats have to be special-ordered. The home has to be set in a certain way so she can interact with her brother and sister.”
Callaway has had to leave his job, relocate to San Antonio and the family has been barely getting by on donations.
Despite all of that, the family said they truly want prayers.
“We just ask for prayer,” Callaway said. “The Bible says when there are two or more together. So that is what we. Asking for prayer.”
Even though little Presley can’t speak or see, she can hear, which they say is the light of their days.
“As her mom speaks, she smiles,” Callaway said. “She does hear us. She has her eyes opened today after having them closed for the past 20 days. So just to be able to see her eyes and watch her interact the best way she can is a blessing. She’s a true blessing to us. She’s strong, and she showed us what faith is. We read about it in the Bible everyday but being able to see it is different. Would say, ‘Thank you’ to her.”
At this time, Callaway said the ultimate goal is to relocate to San Antonio officially to be closest to the great care they’ve received.
While they figure out how to navigate those steps, he said he’s willing to work for anything to help them get by.
If you would like to help the family stay on their feet and remain lifted in prayer as they enter another heartbreaking holiday season, Callaway said you can call him directly at (325) 642-8729.
They are praying that others in their shoes or dealing with some kind of impossible disorder reach out for community and encouragement.
“I would tell people to keep your faith,” Callaway said. “What was meant for bad has turned out good, and the testimony that she is living and breathing every day should give everyone strength to see her and rise with the sun and continue to fight. Continue to pray because there is power in prayer.”
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