Rachel and Tyler Fordham have turned a family's nightmare into a family-oriented good cause.

In June, Rachel Fordham’s daughter, Adele, 6, and son Titus, 4, were fighting what Rachel thought was a stomach bug of some kind.

While Adele seemed to be getting over it, Titus passed out, and Rachel remembers calling her husband, Tyler, a dentist in Port Townsend, to come home to Marrowstone Island and help her with Titus and their other children. At the time, she was pregnant with their sixth child.

After Titus fainted, they headed to the emergency room at Jefferson Healthcare hospital in Port Townsend, where it was discovered that Titus had low blood sugar. He was given glucose and perked up. But because it was odd for a normally healthy child to have such low blood sugar, Titus was sent by ambulance to Seattle Children’s Hospital.

“Most of his labs came back pretty normal,” Rachel recalled of that first time in Seattle Children's. They went home and waited for the results of the other tests.

“Maybe four or five days later, the lab [results] we were waiting on came back, and they called and said, 'You need to bring him back in tomorrow, and we need you to wake him up in the middle of the night to be sure he's OK.' At that point, his adrenal gland had failed.”

Ultimately, there were more tests. One last test had to be sent to Johns Hopkins Hospital in Baltimore because it was a rare test.

And when the result came back in July, it was the start of what Rachel Fordham described was her worst week ever, a nightmare week.

It's the week Titus was diagnosed with adrenoleukodystrophy, ALD, a deadly genetic brain disease that appears in childhood between the ages of 4 and 10 and typically affects boys. It is a brain disorder that destroys myelin, the sheath that surrounds the brain's neurons, according to the ALD Foundation. Brain function declines as the myelin is destroyed. ALD can cause blindness, deafness, seizures, loss of muscle control and progressive dementia.

The Fordhams have one girl, Adele, and five boys. In addition to Titus, they have Garret, 10, Spencer, 8, Gideon, who is 1 and a half, and Walter, who was born in September.

All of the boys have now been tested, and only Titus has ALD.

“He's like the really, really rare new mutation,” Rachel said of how rare the disease is.

TESTING, CHALLENGE

Now, in November, Rachel Fordham can talk about it all serenely, because Titus was given a good prognosis and because the Fordham family has rallied together to do battle with ALD, both with Titus and with other families around the state.

Earlier this month, Rachel testified before an advisory committee of the state Department of Health about the importance of testing for ALD at birth.

“Then we would have known,” she said of early detection of the disease. “It is most commonly misdiagnosed as ADD and by the time they realize it's not ADD and they realize that it's ALD, too much has happened for them to do anything,” she said.

“We're lucky because we found out this way, and a lot of people find out too late. That's a really sad way to find out,” she said of children who have died because of a late diagnosis.

The state Department of Health is expected to decide in January 2016 on whether to add ALD testing to a battery of tests given to newborns.

“The advisory committee was unanimous in recommending it, so I think there is a good chance of it happening,” Rachel said.

In the meantime, Tia Saxton, Titus' aunt, created a YouTube video called the Paddington Challenge, which is based on Titus' love of Paddington Bear, a children's literary character who loves marmalade.

The video features the Fordham family and facts about ALD.

To take the challenge, people smash slices of bread covered with marmalade into each other's faces.

The Jefferson County Parks and Recreation Advisory Board took the challenge in October, with people pledging to donate $50 to the Stop ALD Foundation (stopald.org). One of the park board members is a client of Tyler Fordham, Rachel noted.

The challenge’s goal is to raise awareness and money to find a cure for ALD.

Rachel, Tyler and Titus also were featured in a story on ALD produced by Seattle’s KING-TV that aired earlier in November. Nancy and Brad Zakes of Woodinville, who lost their son to ALD, also were interviewed. That interview is available on king5.com; a link to this story can be found on ptleader.com.

Like the Zakeses, the Fordhams hope that early detection will save lives. The Zakeses have been working on the newborn screening proposal for four years, Rachel said.

FOR THE FUTURE

Although Titus will need to have MRIs done every six months, for now, the testing has concluded that the ALD is not in his brain, Rachel said.

“The minute there is any change in his brain, we've got to do a bone marrow transplant,” Rachel said. “We've already found donors. We don't know them. None of our kids matched, unfortunately,” Rachel said.

“You have to prepare for the worst, because you have no idea,” Rachel said.

“Titus' chances of survival are really good, but we don't know the side effects. Bone marrow is a treatment, not a cure. We just don't know the long-term effects,” she said.

After Tia Saxton made the YouTube video about Titus and the Fordham family, Rachel said she asked Titus why he thought his aunt had made the video.

“Because I like Paddington and people like me,” Rachel said Titus told her.

“He's so optimistic about it all. We're doing what we can and we're grateful. We tell him that he has a disease and we are going to fight it.

“We don't tell him about all the horrible what-ifs, but he does know that he goes to the doctor and it could get bad and we're going to be here for him,” she said.

The YouTube video features country-music duo Sugarland singing the upbeat song “Stuck Like Glue,” because it fits with the Fordham family motto that “families stick together.”