A Las Vegas family is struggling for answers as they care for their newborn suffering from a life-threatening disorder.
It is such a mysterious condition that no Las Vegas doctor can treat it.
In Shel Silverstein's famous children's book "The Giving Tree" a boy grows up in the protective shade of an apple tree, and she loves him with all her heart. Hoping for his happiness, she gives him all she has.
For a young Las Vegas mom, The Giving Tree's story is more than a maternal metaphor.
"And she loved the little boy very, very much, even more than she loved herself," Shai Sifford reads to her son from The Giving Tree.
The little boy in this true life story is Carter Grey Padelford. He was born Nov. 26, 2016.
"He was very...almost swollen," says Shai. "Bright red — like fire engine red. And his skin was just extremely, extremely tight."
From Carter's first day of life, mom Shai and dad Zach were in for a daily, intensely scary fight.
"He's my son and I love him to death," says Zach Padelford. "And I just want to help him. I want the best for him."
Carter was taken to the neonatal intensive care unit. The next day, mom and dad got the diagnosis; a genetic skin disorder called lamellar ichthyosis.
"The skin has scaling all over it," Shai explains. "Just rough patches of really dry skin that don't go away."
Ichthyosis is truly rare. According to the National Institutes of Health, it affects only one person in 100,000. And Contact 13 learned there are no certified pediatric dermatologists in Nevada or specialists who can help.
"It's hard because no one really knows anything about it," says Shai.
The family has hit almost nothing but brick walls in the medical community so for now the best defense has been an industrial size vat of coconut oil which they apply to baby Carter eight times a day from head to toe.
For Carter's mom and dad, the worry is as constant as the work.
So like the apple tree in the children's story she gives her son everything she's got.
"We need to continuously make sure that he is a good temperature because he can't sweat so he can't cool off his own body naturally. So he's got heat intolerance and cold intolerance," says Shai. "Constantly checking his body for any open sores just from his skin stretching and peeling and making sure he doesn't develop any infections."
If he does, it could be deadly for this fragile little boy. But the biggest worry at this point?
"His eyes," says Zach. "Those are the main part right now."
Because his skin is so tight, little Carter can't fully close his big brown eyes.
"If he develops ulcers on his eyes, he could go blind", says Shai.
So, nearly all of Carter's days are spent indoors with a humidifier running and the lights down low. Getting outside for sunshine and fresh air and meeting other kids are things Carter cannot do. On top of all that..."He failed his newborn hearing screening," says Shai. That's due to unnatural wax build-up in his ears.
Through their own research and help from a holistic provider, they've put together a daily routine, doing their best to keep Carter comfortable.
- Two-hour long oatmeal baths with coconut oil
- Followed by Cetaphil baby lotion from head to toe
- Then a light layer of Aquaphor around his eyes
- GenTeal gel in his eyes
Until they can find more answers, they fight fear and live with questions about the future.
"He can move his leg," says Zack. "But when he moves his ankle there's just so much tension because the skin is so tight that we don't know how it will affect his walking when he's older."
While their fears are real, they have hope and faith. And like that generous arbor from The Giving Tree, mom and dad don't want to let Carter down.
Ichthyosis cannot be cured.
Contact 13 at KTNV has been working hard to locate specialists who might be able to help treat the signs and symptoms.
We found Dr. Erin Mathes, Associate Clinical Professor of Pediatrics and Dermatology at the University of California San Francisco.
"It's important for them to know that there are lots of other children out there that are like Carter," Dr. Mathes told us.
She agreed to see Carter after we contacted her. Dr. Mathes says this will be the toughest time of his life. But, there's hope!
"If a patient with Ichthyosis makes it through infancy — which now more and more patients are doing--then they can have a normal life expectancy."
Carter's skin doesn't properly protect him from the outside world. His daily routine is key to keeping him comfortable and moving as much as possible.
Little by little, Dr. Mathes believes he'll make it through.
She's optimistic Carter will benefit from genetic-based targeted therapy.
Watch the full interview with Dr. Mathes
"I would say our medical knowledge and understanding of this is expanding really, really, really rapidly right now and I think things are going to be different in 10, 15, 20, 30 years."
We also put Carter's family in touch with doctors from UC San Diego and a specialist with contacts at the Phoenix Children's Hospital and Mayo Clinic in Scottsdale.
They're already working to set up a consultation to see Carter and discuss several treatments, including systemic therapy that can help his condition.
The family will also be heading to Utah soon for surgery that could help Carter close his eyes.
May is Ichthyosis Awareness month.
Click here for more information from FIRST (Foundation for Ichthyosis and Related Skin Types) a national support group which will be meeting right here in Las Vegas in September.
You can also visit Carter on his Facebook page Loving Carter.
