Baby Josiah closes his eyes and pushes his soft, hairless head into his mother’s chest, wrapping his chunky legs as far around her waist as they will reach. His hold is tight, clinging for the comfort and security — something he learned is a treasure after his parents traded their life in Lodi for a summer of treatments in the children’s ward at UCSF Medical Center.
With a shy smile, his mother kisses his forehead where his signature buoyant curls once sprouted, before they knew that an immune deficiency was trying to take his life.
When his father hands him a shiny, plastic banana, Josiah opens his eyes and moves his head out of hiding spot against his mother and opens his mouth into a round “O” as he reaches for the toy.
He is 1 year old. And the only things that make him smile more than his mommy, daddy and grandmother’s voices when they sing “Itsy Bitsy Spider” are his toys.
But those smiles that make his cheeks grow perfectly round fade as the cold metal handle turns and the heavy hospital door is pushed open.
A stranger — someone other than the people who bathe him with hugs — enters the room Josiah has come to know as home. The excitement in his eyes over his mother’s kisses and a simple toy is gone.
The skin where his eyebrows used to be furrows into red wrinkles of fury. His sleepy hazel eyes fill with salty tears. From deep in his lungs, still strong despite his treatments, comes a harrowing scream.
It is a cry of fear. Of remembrance and disappointment.
Fighting with faith and love
Josiah, at only a year and a few days old, knows what pain is. He associates most adults with procedures. Skin, probed and prodded. Dilated baby eyes. Soft, delicate skin stuck with sharp needles injecting him with serums he has no way of understanding.
His stomach is plugged with so many ports it looks as though he has a janitor’s collection of keys protruding out of the top of his tiny denims. Underneath the elastic waist, small tubes lock into the ports, providing a steady stream of drugs that are working to give him and his parents a normal life.
Amanda Madrid carries Josiah around on her hip as she navigates the corner hospital room that overlooks a grove of eucalyptus trees. If they lean far enough back on the couch, they can catch a small glimpse of the Pacific Ocean on a clear day, or the outside patio of the nearby psychiatric ward.
Amanda Madrid is petit, and at 24, could be mistaken for a lot younger. Though she is small and soft-spoken, she has found her strength in motherly dedication to her sick baby boy. She speaks with grace and thankfulness, even about the times she wasn’t sure her baby boy would make it through the night. She leans on her husband, Matt Madrid, his love and support, and the power of believing in a big God.
The young parents met at Lifesong Church in Stockton. They clicked fast — joined by their strong belief — and married in a traditional ceremony in the gardens of Lodi’s Wine & Roses two years ago. It was their first step toward a life together.
They moved into the home where they live in Lodi. They were deeply in love. They dreamed of making a life, a house loud with children playing and singing.
“Before this, I wanted 10 kids,” Amanda Madrid said. “I never thought I’d have a child who was sick.”
“We never thought we would be here,” says Matt Madrid, sitting on the couch against against a wall of windows in that hospital room. “But we believe in God and we believe in miraculous healing.”
For nearly four months, Amanda and Matt Madrid lived in a hospital room in San Francisco, leaving behind their Lodi life and home: a 100-year-old Victorian they remodeled after they were married. It was their first dream that came to a reality, complete with Amanda’s at-home daycare center, called Amanda’s Pandas.
She closed the business when Josiah required more attention, and then more doctors’ visits. Matt Madrid, too, took leave from his local construction job as they awaited help for their first child.
‘I knew something wasn’t right’
When Josiah Madrid was only two weeks old, he had his first scary trip to the hospital. He was a magnet for infections. His growing little body seemed to be a target for illness.
When he was two weeks old, Amanda found blood in his diaper.
“They told me he was teething,” she said. “I knew something wasn’t right.”
Confused, doctors encouraged Amanda to give up dairy and soy, to restrict her diet drastically. She did everything doctors recommended.
Still, her baby boy remained sick. Needy. Irritable. His skin became dry and irritated. To ease the constant itching, Josiah would claw at his face with his fingernails.
“Amanda had to sit in the back seat to hold his hands to go to the grocery store, or it would be a bloody mess,” said Meschell Bernardy, Amanda Madrid’s mother.
It broke the young parents’ hearts.
In the fall of 2012, Josiah Madrid was diagnosed with Wiskott-Aldrich Syndrome, a rare, inherited immune deficiency disorder that made doctors unsure if he would survive without a bone marrow transplant.
This wasn’t the first time the family had struggled with the syndrome. It was what Bernardy had feared. Her sister’s child had died 16 years prior, after receiving a bone marrow transplant for his Wiskott-Aldrich Syndrome. He contacted spinal meningitis one year after the transplant.
It was Bernardy who recommended to Amanda that Josiah be tested for Wiskott-Aldrich, though she knew her daughter wouldn’t want to hear it.
“I can still hear her,” Bernardy says, pausing to hold back tears, “... screaming on the phone.”
Amanda didn’t want to believe that her baby could have the same disease.
At home in the hospital
What would become the hardest part for Amanda Madrid was knowing that the disease was passed through her, that she couldn’t give her son the genes to keep him healthy.
A woman with a mutated X chromosome will not have the disease, but will be a carrier. The deficiency can be passed through many generations. In most cases, including Josiah’s, the body is unable to make certain types of white blood cells that help the immune system fight infection. Blood platelets are often smaller and fewer than normal, which inhibits the body from controlling bleeding.
The only thing that can cure the disease is a bone marrow transplant.
On July 9, Josiah received the bone marrow transplant that saved his life. The donor was a 29-year-old man. That’s all they know about him.
With Josiah’s vitals checked every four hours, the hospital has become their home.
They make the best of it. They find comedic relief in their small room with a makeshift couch against windows, a twin hospital bed and the Mac computer they brought in, mainly for watching movies.
They aren’t unlike other twentysomethings, making fun of each other and pulling pranks on the staff. Amanda says that they’ve been watching the animated movie “Despicable Me” over and over again at Matt’s request. From his seat on the couch, he smiles big, shaking his head, unable to honestly deny the accusation. Every Friday night is movie night with grandma — aka Mimi — who stays with them half of the week.
There’s also “Shark Tank” — lots of it. Comedies help keep their spirits light. So do the dance parties with the nurses. Every member of the staff has had a chance to work on their “Gangnam Style” dance routine.
And then there are the pranks — like the one where the giant balloon sprung up when they tried opening their hospital room door. It’s partly why the nurses have fallen for this endearing little family.
Each night, they cuddle with a soft, furry blanket friends made for them that proclaims Josiah’s healing through positive words and photos of his life.
Someday they hope to meet the man who donated the bone marrow that is giving Josiah a second chance at life.
“He will also be considered part of our family, and there will always be a seat at our table for him,” Bernardy said.
‘I believe he will do big things’
After spending the summer in that hospital room at UCSF, followed up with a four-week stay at a home for recovering families located down the street from the hospital, Josiah has returned to his real home in Lodi.
His skin is clear of blemishes, and he smiles wide. He’s even learned to crawl, and though he is still isolated, he is allowed to go on an occasional walk outside. The Madrids are still frequent visitors at UCSF, but they are no longer residents. Josiah is under the watchful eyes of doctors at UCSF and Roseville Kaiser Children’s Hospital, and Amanda monitors his around-the clock meds.
“We still have a long road ahead, but thank God daily for how much he has improved,” Bernardy said.
The time in the hospital and the realization of almost losing their son has made Matt and Amanda reflect on what it is they want from life.
“This experience has been transforming; it really impacts you,” Matt Madrid said.
While he enjoys his career, he is realizing that he wants to return to fine art and his passion as an artist.
Likewise, Amanda wants to reopen Amanda’s Pandas, but this time as a Christian or ministry-based daycare, where the children can go to the store or on regular outings to pray for people who are sick and encourage them.
“Now I see, and want our life to be a testimony,” Amanda said. “Children have a huge gift of faith.”
Josiah not only inspired her change in thinking, he will be a huge part of it.
“My kid’s life has a big meaning. I see him really enjoying ... I believe he will do big things,” she said.