NORDLAND — A 4-year-old boy suffering from a rare genetic disease remains optimistic about his future, his mother said.
“We told him that he is sick and we are doing everything we can to make him better,” said Rachel Fordham of Nordland about her son, Titus.
“He is still happy and excited about life and looks to us to make sure everything is OK, so as parents, we are the ones feeling the pressure,” she added.
Titus suffers from adrenoleukodystrophy, or ALD, a hereditary disease that attacks the central nervous system and the adrenal glands.
The disease is present in one in 17,000 boys from ages 4 to 10. It eventually causes disability — with those in the latter stages losing the ability to hear, talk and walk — or death, according to the Stop ALD site, www.stopald.org.
The Fordhams’ optimism originates from an early diagnosis, at a time when a bone marrow transplant offers the possibility of a cure.
The Valley of the Trolls Spooktacular fun run Saturday will raise funds for ALD research, said organizer Jane Storm.
The original intention was to benefit the Friends of Jefferson County Parks and Recreation, but when Storm heard about Titus’ situation, she decided to channel a portion of the proceeds — the amount hadn’t been determined as of Thursday — to the Stop ALD group to support ALD research.
She also wants to raise awareness of the disease.
A costume contest with prizes will begin at 4 p.m., followed by a 5 p.m. race in which participants can choose a 1-or 3-mile track.
The run will be at Troll Haven/Bandy Farms, 950 Gardiner Beach Road in Sequim.
Runners will pay a $10 entry fee for the short race and $20 for the longer one.
Titus was healthy and happy until early summer, when he showed symptoms that his parents thought was the flu.
After several medical tests, he was diagnosed with ALD.
“When we found out about the disease, we were really scared and thought we were going to lose him,” Rachel Fordham said.
“We found out there were no great cures or great treatment and a bone marrow transplant has only about a 60 percent chance of success, but at least we have a chance.
“A lot of parents don’t get a chance to fight it.”
Finding that the disease was hereditary and passed through the mother, the first concern was for the family’s other five children, four of which are boys. They are 10, 8, 6, 17 months and a newborn.
They all tested negative, which was a relief to Rachel and her husband, Tyler, a Port Townsend dentist, who feared they might lose their entire family.
Also negative were tests of the children as potential bone marrow donors, so the family joined a donor registry in the hopes of finding a match.
Donors are usually ages 18 through 44, with the younger ones having the greatest chance of success.
Those who sign up get a cotton swab in the mail and run it on the inside of their cheek to determine compatibility.
Any donor who knows the family most likely won’t be a match, but that doesn’t mean they shouldn’t register.
“Even if you can’t donate to Titus, there are other kids who are in need,” Rachel Fordham said.
“And every one of them is somebody’s Titus.”
Titus is lucky, she said, because those who are farther along in the disease cannot be helped by a bone marrow transplant.
While caring for Titus, the family is seeking to raise awareness of the disease and its prevention by lobbying to add tests for ALD to all infant screening in the state.
“It all comes from the same drop of blood,” Rachel Fordham said.
“If it tests positive, they can fight it from birth, which has a better chance for a cure.”
On Saturday, participants will be encouraged to take the Paddington Challenge, which is modeled after last year’s Ice Bucket Challenge that raised funds and awareness for ALS.
This features Paddington the Bear’s favorite meal and requires those challenged to put marmalade on toast and then smash it on their face.
They then challenge others to do the same and contribute to the cause.
“I would like to challenge runners and walkers on the Peninsula to come out and show their support for the Fordham Family and Titus,” Storm said.
“Let’s show them how great it is to live in a small community that cares for one another.”
Preregistration for the race is still open by calling 360-385-2291.
To watch a video of Titus that contains information about ALD, go to http://tinyurl.com/PDN-ALD.
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Jefferson County Editor Charlie Bermant can be reached at 360-385-2335 or cbermant@peninsuladailynews.com.