All Pulling for Jonah: Messages pour in from around the world for child born with rare disorder

"I just am a talker. If ... I wasn't able to come out here and spout off about it, it would just overwhelm me."

A week ago, the only people reading Patrice Williams' blog were friends and family.

But now the comments won't stop coming -- some from people she knows, but mostly from people she doesn't, an electronic flood of good wishes and good will.

It's all because of Jonah.

Patrice gave birth to Jonah, her second child, on Feb. 27.

Jonah was born with epidermolysis bullosa, a rare, genetic skin condition called "EB" for short. Some people with the disease, which causes the skin to blister at the slightest touch, are treated like burn victims.

Patrice's pregnancy was healthy.

Everything seemed normal. Online, she posted photos of her growing belly and updates as she and her husband, Matt, both 27, prepared for their newborn. But as Patrice gave birth at Forsyth Medical Center, she heard the doctor delivering Jonah comment about a cut or blister on the baby's lip. It seemed as if he was in pain. His hands and feet were raw and red.

Within hours, Jonah was transferred to the neonatal intensive-care unit at Brenner Children's Hospital.

Patrice turned to her computer:

Feb. 27: Jonah Alexander was born at 3:50 p.m. He seems very strong, but was born with some sort of skin issue. I'm so happy he's here, and so completely devastated and scared at the same time. I can't explain to you how our lives have turned from elation and happiness to complete heartbreak in a matter of minutes. We are both so low right now. Please continue to pray for our strength, that Jonah is the toughest baby ever, and for a miracle.

It turned out that Jonah was born into a minority. He is one of the estimated 25,000 to 50,000 people with EB in the United States.

The children are sometimes called "butterfly babies" because of their fragile skin.

Many milder cases go unreported, said Geri Kelly-Mancuso, the nurse educator for DebRA, the Dystrophic Epidermolysis Bullosa Research Association of America.

Human skin has proteins that act like roots in a lawn, Kelly-Mancuso said.

In people with EB, those roots are damaged or missing. Any friction will make the layers of skin move and blister. There are multiple types of EB within four large groups. They vary in treatment and severity, and the outlook for people with them ranges from dying in infancy to being able to lead a normal life.

Start of the blog

Patrice's blog had happy, ho-hum roots -- she started it in March 2008 when she was seven months pregnant with her first child.

She and Matt met at West Forsyth High School and went on to college together at East Carolina University. They now live in Winston-Salem. They married in May 2004.

Matt is an accountant for Temporary Resources Inc. Patrice is an administrative assistant at the regional Young Life office.

They were more than ready to be parents.

She thought that blogging would be an easy way to update friends and family about her pregnancy. Its simple title -- "Williams Family Blog" -- reflected that.

But after only two posts, Patrice's little corner of the World Wide Web turned into an outlet for grief. Her son, Gabe, was stillborn on April 22.

Now Patrice and Matt suspect he may have had EB, too.

Writing on her blog gave her a way to cope then. And it does now.

"I just am a talker," she said. "If I was getting all this news about Jonah and I wasn't able to come out here and spout off about it, it would just overwhelm me.

"If people are going to be calling and asking, I'd just rather put it in … words where I can think about it longer, just say it all at a one time rather than repeat it 50 times. But more than anything, I think it's a journal for me."

Daily photos, updates

She is letting the world know almost in real time how Jonah is doing from her Dell laptop in a sixth-floor waiting room at Brenner. There are daily photos, updates and shout-outs to doctors, nurses, friends and family -- and a daily list of prayer requests.

As the days went on, Patrice and Matt noticed something curious: The number of comments was increasing, and more often, they were from strangers as far away as Bolivia, South Africa, Germany and Australia. According to an online counter, the site has gotten more than 97,000 hits. And where Patrice used to get a handful of comments each time she posted, now she gets 40 to 60.

"Before Jonah, I think literally 10 people read it," she said.

A Facebook page is funneling people to the site, too.

The Williamses are also getting phone calls from people they don't know. As they sat in the waiting room Wednesday afternoon, the courtesy phone in the corner jangled.

Matt's mother, Debbie Williams, answered it. The caller was a woman from Chicago. She was thinking of Jonah, she said.

The conversation online is going two ways. Patrice is getting advice: Maybe Jonah would have an easier time eating from a bottle better if she and the medical staff tried a special nipple made for babies with cleft palates. (Jonah doesn't have a cleft palate, but a normal nipple could give him blisters). Maybe the doctors should try wrapping Jonah's wounds in different gauze.

The shower of medical advice has been overwhelming. That's why Patrice's sister-in-law, Amy Crump, has taken to organizing and compiling comments for her in a notebook.

"It's so encouraging. I don't do it for the comments because I didn't get the comments" before, Patrice said. "I really think God is doing something through Jonah."

Lots of opinions

March 1: Sorry for the tardiness of this post -- I've been trying to get it up since around noon. We got to go to rounds this morning for Jonah, and it was so great to have a whole team of doctors and nurses there talking how to best serve and care for him. I didn't really know the rules for rounds, but I took it upon myself to ask lots of questions and offer LOTS of my opinions. The doctors were very patient with me, and didn't seem to mind my input at all…. Jonah had a really hard time this morning when they changed all his bandages. Our weekend nurse, Stacey (who is totally awesome), said that she and the three other nurses doing the dressings were all three crying before it was over.

One of Jonah's doctors, Dr. Heather Furlong, has taken the blog-generated suggestions to heart as she reads and learns about EB. At 34, she has never treated anyone with it. She has been a neonatologist for six years. Even more experienced doctors and nurses at Brenner have limited experience with EB.

"When you're faced with this," Furlong said, "you're kind of put to the fire, you know, because your patients put you to that test. It's something that you always learn about in medical school, and it's something I studied for my neonatology boards. But it was always one or two lines.

"So it's very different when you've got a patient in your nursery to take care of."

A lot of parents would still be stunned with a diagnosis such as Jonah received. Instead, the Williamses are bringing Furlong information, and that's helpful, she said.

"You have to realize that there are no egos involved, and you just to have to roll with it."

Moment of recognition

March 3: I was here by myself for about an hour this morning, and Jonah was the most wide awake I've ever seen him. He focused on me so hard, and I felt like he really knew it was me. We had some great one-on-one time (I cried through most of it), and I was thankful for his alertness.

In Brenner's NICU, Jonah's arms and legs are wrapped in two layers of gauze, his belly and face slicked with Vaseline. He is on morphine to treat pain, and his skin is so delicate that his diaper is draped loosely under him. Dark, tiny blisters are sprinkled across his head and face.

Patrice has held him just once, right after he was born. That was before anyone figured out what was wrong.

March 4: Sorry it has taken me so long to post -- today has been an insane day! We've gotten so much information, but it has been busy and a little overwhelming to say the least. He's so strong, but I wonder sometimes how much one little body can take.

Test results to determine what kind of EB Jonah has won't come back for a couple of weeks.

So today, there's no way to say what his outlook is.

And because EB is genetic, his parents have to think about what could happen with future children.

That's why the Williamses concentrate on what they can control now.

"If we don't take joy in the small victories God gives us, we'd go crazy," Matt said.

March 5: They talked to us about possibly getting to hold him soon, but Dr. Furlong says she'd like to see his (white blood cell) count going up before we hold him. We are TOTALLY okay with that. There's no way I'd hold him if it meant we might be risking infection. It's funny, but after missing out on so much after we lost Gabe, I'm thankful for every wiggle, squeak or facial expression. For now, that's so much more than enough. We don't take a single bit of it for granted. Don't get me wrong though -- as soon as they say we can hold him, people better get out of the way. I won't be responsible for my actions.

■ Laura Giovanelli can be reached at 727-7302 or at lgiovanelli@wsjournal.com.