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Family of local boy with rare disease gets a helping hand

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Jack Todd, 11, has MPSII, a disease that requires a weekly enzyme replacement treatment. His mother, Lisa Todd, holds the pump that provides the enzymes. (Greg Sorber/Albuquerque Journal)

Jack Todd, 11, has MPSII, a disease that requires a weekly enzyme replacement treatment. His mother, Lisa Todd, holds the pump that provides the enzymes. (Greg Sorber/Albuquerque Journal)

Every week, 11-year-old Jack Todd gets really tired during a four-hour infusion that provides him with an enzyme that his body doesn’t make.

Meanwhile, his parents, who have two other children, ages 7 and 20, have their hands full making sure their needs are met while Jack’s are, too.

“The struggle is making sure the other kids don’t feel like it’s all about the kid who’s sick,” said his mother, Lisa Todd, 39, a certified public accountant.

So today will be special for the Todd family. They will get their house near Academy and Eubank cleaned and chores done by a family they never met – a mom and dad and their six kids – who will be spending 20 days hitting 20 cities to do random acts of clean-up kindness.

When the Murset family hits Albuquerque around 8 this morning in their RV, they plan to wash the Todds’ windows, give the place a good spit shine, then drive off just as stealthily as they arrived.

The medication Jack Todd gets is a combination of synthetic enzymes, in the vials above, each of which costs $10,000, and pouches of saline solution. The medication cost is covered by his parents’ insurance. (Greg Sorber/Albuquerque Journal)

The medication Jack Todd gets is a combination of synthetic enzymes, in the vials above, each of which costs $10,000, and pouches of saline solution. The medication cost is covered by his parents’ insurance. (Greg Sorber/Albuquerque Journal)

What a relief for Lisa Todd. “I can’t get to things like that,” she said of the chores the guest family, headed by certified financial planner Gregg Murset, 40, and his wife Kami, 37, from Queen Creek, Ariz., will take on. “Not with everything else that’s going on.”

What’s going on is that Jack has mucopolysaccharidoses II, also known as Hunter’s disease, a condition that affects only 1 in 100,000 people in the U.S.

Its impact is slow and steady. According to the MPS Society website, children with MPS II (the type Jack has) are missing an enzyme called iduronate sulfatase, which is essential in cutting up the mucopolysaccharides called dermatan and heparan sulphate.

The incomplete broken down mucopolysaccharides remain stored in cells in the body, causing progressive damage. Babies may show little sign of the disease, but as more and more cells become damaged, symptoms start to appear.

So far for Jack, a quick-to-smile boy who likes flag football, the main evidence of the disease is that he has difficulty bending and straightening his fingers. People born with the disease often also have flat noses and bushy eyebrows and usually don’t live past 50, according to his mother.

During their lifetimes, they often suffer hearing loss, heart disease and other problems because of cell damage, according to Jack’s doctor, Randall A. Heidenreich, a pediatric geneticist specializing in the disease at the University of New Mexico.

He and his partner are the only ones in the state with the specialty. “The care for all children,” he said, is “enzyme replacement therapy,” with a synthetic protein that those without the disease make naturally.

“Basically it’s a biopharmacuetical,” he said of the medication with which Jack is infused. He gets four vials a week; each vial costs $10,000, which is covered by his parents’ insurance.

Despite his illness, Jack goes to school every day, and, since he began receiving the infusion, has more energy to enjoy things like playing during recess and going trick-or-treating at Halloween.

During last week’s infusion session, nurse Tom Kerwin came to the family’s home and set up in the living room, assembling syringes and other supplies the Todds store in a kitchen cabinet, which also has a bucket into which used needles are discarded.

First, the site of Jack’s port, at the top of his chest, is numbed with a cream 30 minutes ahead of time, then he gets hooked up to the hand-held battery-operated portable pump. He first gets an adult dose of Benadryl to prevent a reaction to the drug.

Then, the enzyme mixture goes in. It takes three hours in all for the infusion, which Jack gets every week. If there were an irregularity, the pump would beep.

Jack Todd lifts his shirt so the nurse can access the port in his chest in order to infuse the enzymes. (Greg Sorber/Albuquerque Journal)

Jack Todd lifts his shirt so the nurse can access the port in his chest in order to infuse the enzymes. (Greg Sorber/Albuquerque Journal)

During a recent treatment, Jack lay on the couch watching TV for a lot of the time, the nurse passing through the living room to take his blood pressure and heart rate every 15 minutes.

Jack doesn’t like to talk about the experience, besides agreeing with a rueful “Yeah,” when asked, “Does it suck?”

When it’s over, he’s often too wiped out to play in the flag football league with his church.

“They’ll never be a point when we can do it without the nurse,” Lisa Todd said. “The doctor said this is always how it needs to be.”

With the kitchen and living room serving part time as spots for Jack’s care, and Lisa Todd taking Jack to 12 different care providers every three months, the Mursets will have their work cut out for them.

The parents and their kids, two girls and four boys ranging in age from 7 to 17, will stop first in Phoenix, rolling in to Albuquerque early this morning in a 33-foot RV. “It’s a party on wheels, OK?” says patriarch Gregg Murset. “Because when you have eight people driving down the freeway, it’s a party.”

When they pull up to the Todd home, they will be acting almost like MerryMaids.

“Were just gonna do normal household chores,” he said in a phone interview shortly before his departure Saturday. “Mow lawns, trim the bushes, clean bathrooms, whatever they would like us to do.”

Other cities the Mursets will visit on their 6,500-mile romp through the country in an 8-mpg 33-foot RV are Chicago, New York City, Atlanta, Washington, D.C., and San Antonio, Texas. They’ll clean the inside of one family’s car and stack wood for another.

The nucleus for the Mursets’ trip was technology-based. Murset is the CEO of an app called myjobchart, which allows children to track the chores they do at home and earn points for them.

Gregg and Kami Murset, center, are bringing their six children to Albuquerque to help the Todd family. The kids are, from left, Spencer, 9; Adam, 11; Sierra, 15; Sydney, 13; Zach, 17; and Sterling, 7. (Courtesy of Murset Family)

Gregg and Kami Murset, center, are bringing their six children to Albuquerque to help the Todd family. The kids are, from left, Spencer, 9; Adam, 11; Sierra, 15; Sydney, 13; Zach, 17; and Sterling, 7. (Courtesy of Murset Family)

Kids can spend or donate the points they earn, and their earnings can go to charities on the website associated with the app.

The Murset family decided to apply the principles of the app to their lives for a 20-day period by giving directly to some of the charities they partner with, spending their own time and money to help families served by those charities.

“We went to the charities and said, ‘This is what we’re thinking,’ and they said, ‘Awesome, we’ll line up families.’”

The Todds were one such selected family, whom the Mursets will meet for the first time this morning.

Of this trip, Murset said: “This is our maiden voyage. I have a feeling that it’s going to happen again.”

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