New life for ‘Joy boy’

Natalie, Gabe and Isaac Corbett
Like most new parents, Gabe and Natalie Corbett of Henrico have had to endure more than a few sleepless nights, dry many a tear and soothe many a bedtime fear during their son’s first year.

Like most new parents, they are also adapting to a considerably tighter budget than what they knew before Isaac was born in October 2010.

But unlike most new parents, their big expenses are not strollers and cribs and diapers. They are hospital bills.

As for the sleepless hours, night-time terrors and long crying spells, they are not Isaac’s.

The tears and fears that keep them awake are their own.

Last September, just a few days before his first birthday, Isaac was diagnosed with a rare genetic disorder called mucopolysaccharidosis (MPS Type 1).

Because both parents are carriers of lower-than-normal levels of a specific enzyme, Isaac lacks the enzyme, which is needed to break down complex mucus-like sugar molecules called mucopolysaccharides. The molecules then build up in the body and wreak havoc on organs and tissues throughout the body.

There is no cure, and on the spectrum of severity of the disease, Isaac has the most severe form known as Hurler’s Syndrome.

Most children, the Corbetts have been told, die from this disease by the age of 10. The day she received that diagnosis, says Natalie, will “forever be engraved in my mind as the worst day of my life. . . . [The news produced] one of those near out-of-body experiences where I struggled to realize that this was real and not some nightmare I was having.”

As for Gabe, he described the diagnosis as something resembling “more like a sick nightmare or a movie synopsis that you would never even want to think about.”

“We both couldn’t sleep at night more than a couple of hours at a time,” recalls Gabe of the days following the diagnosis. “We’d wake up in tears, and try to keep the sobbing down in case the other one of us was able to sleep. Every time we were in the shower or driving, we would just start bawling.”
Isaac and Gabe Corbett

Mysterious ailment
In Isaac’s early months, the only signs that something was amiss were a non-stop runny nose and some oddities of his skeletal structure, which were attributed to his upside-down, folded-in-half position in the womb. Weighing almost nine pounds at birth, Isaac had trouble fitting into his mother’s petite 5’3’ frame, and was delivered by C-section. But with only a warning from the doctors to keep an eye on his hips, Isaac was sent home an apparently normal, healthy newborn.

At one of his first check-ups the pediatrician detected a hernia, and the Corbetts were sent to a urologist -- “the beginning of many specialist referrals to come,” says Natalie. At three weeks of age, Isaac had his first surgery to repair an inguinal hernia.

At his one-month appointment, Natalie expressed concern over Isaac’s leg joints and hips, and the Corbetts were sent to an orthopaedic surgeon. Both hips were found to be out of the socket, and Isaac was put into a harness.

The next specialist Isaac saw was a neurologist, who examined his slightly-misshapen head and noted that might need a helmet. But by now the Corbetts had learned that Isaac would need surgery on his left hip, leaving him in a body cast.

“I was beside myself when I heard this news,” says Natalie. “It seemed that our precious little boy couldn’t catch a break. Just when I thought he was going to get out of the harness and be able to move around like a normal baby, I discovered that his movements would be entirely limited . . . for three months.”

Meanwhile, Natalie had gone back to work and Isaac was in day care, exacerbating his already-chronic congestion. When the day came for the surgery, the anesthesiologist had to turn Isaac away due to the risk associated with his congested airway.

Over the next few months the Corbetts saw a succession of specialists, from cardiologists, geneticists, and allergists to craniofacial and ENT doctors. At five months, Isaac’s congestion eased enough for him to have the hip surgery, and he was put in a cast. But he continued to suffer from constant nasal drainage and ear infections, and at eight months, he had tubes inserted in his ears.

“After Isaac’s third surgery – hernia, hip, ear tubes – we started wondering what could be the common link between all of these,” says Gabe, noting that Isaac was averaging two doctor visits a week. “Why does he have such a high palate with thick gums?

“The biggest question was the nose that no one could figure why it kept running. We’d go through two or three boxes of Kleenex a week; [his nose] was red-raw all the time.”

The body cast was replaced with a brace, but Isaac’s skeletal challenges continued. At 10 months, he was significantly delayed in development, and could still not crawl, roll over, or come to a sitting position. After analyzing a full spinal MRI, the neurosurgeon suggested that Isaac might need surgery to remove part of the first vertebra in his neck and create more space.

It was at a follow-up visit with the geneticist, after blood tests had been done on all three Corbetts, that the doctors pinpointed the problem and delivered the devastating diagnosis.

Raspberry-challenged
Although MPS has no cure, Duke University Medical Center is one of two hospitals in the U.S. that has had some success with bone marrow transplants for MPS Type 1 children. Gabe’s father, Dr. Eugene Corbett at University of Virginia, began researching the process from the moment of diagnosis. Within a week -- a week in which they had
planned to celebrate Isaac’s first birthday – the Corbetts had moved into the Ronald McDonald House at Duke.

Over the next month, Isaac had his adenoids out, his nasal passages enlarged, a shunt inserted into his brain, and a central line installed to transmit chemo and drugs. Complications from the line placement surgery landed him in intensive care on a ventilator for two days, and required extra time to heal before he was ready for the nine days of chemo that prepared him for the transplant. But in December, he received a bone marrow transplant from a cord blood donor.

Throughout all the pain and uncomfortable side effects, says Natalie, “Isaac continued to be our little joy boy.” Nurses and doctors loved coming into his room, she says, because Isaac would greet them with a giant smile and silly laugh.

“We always joked that Isaac never learned to blow bubbles or raspberries because his lips were never closed,” Natalie says. “He loves to smile and laugh more than anything, which is quite fitting considering that his name means ‘laughter.’ . . . He has amazed many people with his incredible attitude.”

Becoming ‘clean freaks’
After a couple of months in the hospital, Isaac was discharged, and his parents could care for him in their Durham apartment. In addition to three medications requiring infusions that they have to give Isaac each morning and night, they have 10 oral medications and two creams to administer. Because of his compromised immune system, Isaac has to remain in the apartment at all times, except for clinic visits.

“He wears a mask any time he’s outside of the apartment,” explains Gabe, “and we have become clean freaks.”

Until the day that Isaac is cleared to go back to Richmond -- possibly in late spring -- the Corbetts have adopted a grueling routine. They try to get to bed by 10, because Isaac wakes up once or twice every night needing a feeding, diaper change, and often a bath because he is on so many fluids from IV’s.

Rising at 7 a.m. to warm up the refrigerated IV meds, Isaac’s parents must sterilize a tray, remove air from saline and heparin syringes, prime two IV pumps, and gather all supplies within easy reach.

Before waking Isaac, his parents have also learned to have Cheerios handy to distract him. “He’s a curious kid,” says Gabe, “[and wants to play] with his central line lumens.” It takes 45 minutes to draw blood and administer all Isaac’s morning medications, for which he is rewarded with more Cheerios “for hanging in there with us,” says Gabe.

Meanwhile, Natalie fires up her laptop. Because Gabe has had to leave his job selling real estate, the Corbetts feel fortunate that Natalie is employed by a company that allows her to work remotely.

After breakfast, Gabe runs Isaac through his physical therapy and puts him down for a morning nap. Following the nap, the two either head to the clinic for a visit of two to five hours, or play host to visiting physical, speech, and occupational therapists. Then it’s time for the evening round of IV/oral medication prep.

Positive outlook
It’s a schedule that leaves virtually no free time for Isaac’s parents to enjoy as a couple, except when Gabe’s parents visit and they can slip out for a movie. The financial struggles are also daunting, as they continue to maintain the apartment in Durham, Natalie’s place in Chesterfield, and Gabe’s home in Rockett’s Landing -- while the hospital bills mount.

What’s more, the Corbetts have been told by other transplant families that they need to maintain their savings, as they face the possibility of long-term care for Isaac. He will require several more surgeries for his skeletal abnormalities, which will not be helped by the transplant. He will also need extensive physical, occupational, and speech therapy, and may have some eyesight issues and learning disabilities as well.

But you won’t hear Gabe and Natalie complaining.

The Children’s Organ Transplant Association (COTA) is working with them to raise funds for Isaac’s transplant-related medical needs, and Gabe’s sister, Caroline, is working on benefits such as an ice show at Skate Nation and a yard sale at Rockett’s Landing [details below].

Although MPS Type 1 can’t be cured, the bone marrow transplant will save his vital organs. The previously-missing enzyme now resides in his new growing cells, and will not only prevent future build-up of the mucopolysaccharides but also break down those already collected.

“We no longer have to dread birthdays, wondering if this will be his last one,” says Natalie. Isaac has made tremendous progress, and is able now to stand up against the sofa for a minute or two. His perpetual runny nose is gone, he can pick up tiny bits of cereal and feed himself, and he waves bye-bye and plays pat-a-cake.

“The doctors all say that he is a poster child for a successful bone marrow transplant,” reports Natalie. “We are thrilled about the new life these new cells offer our son and we are excited to watch him grow.”

Gaining perspective
All in all, says Gabe, the experience has helped him realize how precious the opportunity to be a parent is.

“I shudder [when I think] what could have happened if Isaac’s hip doc hadn’t mentioned that we follow up with genetics,” he says, noting that the bone marrow transplant is an option only for children under two. “We probably would not have figured it out until too late.”

In addition, he says, the experience has given both parents a unique sense of perspective.

“I’d like to think it’s made us more patient and understanding, and less caught up in the stuff that doesn’t really matter,” says Gabe. “When your entire life changes in a single phone call, you realize real quick that a lot of your cares, worries, and desires are petty.

“If you have your health, if those you care about have their life and health, we really can live with just about anything else.”

The outpouring of support from friends, family, and “folks we met along the way” has overwhelmed them, says Gabe. “Meals, notes, cards, care packages, advice, babysitting so we could get away for small periods of time, prayers, volunteering, and just general thinking about us. Everyone was anxious to find a way to help us.

“I never felt so alone as when I got the news [of the diagnosis] at 2 p.m. on September 30,” he adds.

“Now I know we’re not."

* * *

A Spirit Night fundraiser for COTA will be held in Isaac’s honor from 5:30-8 p.m. March 28 at the Willow Lawn Chick-fil-A; guests must tell cashier they are there to support COTA. On May 5, a benefit ice show will be held from 5:15 - 6:30 p.m. at SkateNation Plus in Short Pump; for information call Coach Stephanie Meier at 364-1477. Volunteers interested in helping to staff fundraisers can contact Caroline at .(JavaScript must be enabled to view this email address). For details or to donate, visit http://www.cotaforisaachc.com.
Bail Bonds Chesterfield VA

HCPS wins national honor for overhaul of Code of Student Conduct, supports


Henrico County Public Schools recently was recognized by the National School Boards Association for a sweeping overhaul of the school division’s approach to student supports. HCPS was one of five large U.S. school systems recognized with a first-place honor in the 2017 Magna Awards, presented Saturday in Denver at the organization’s annual conference. The awards recognize school divisions and leaders “for taking bold and innovative steps to improve the lives of students and their communities,” according to the group.

The award recognizes Henrico Schools’ efforts of the past several years, from re-examining its policies to implementing more support systems. After a two-year conversation with the community through public hearings and other feedback, HCPS adopted a revised Code of Student Conduct for the 2015-16 school year. > Read more.

Environmentalists say budget hurts efforts to protect bay

Environmental groups are outraged at the Trump administration’s proposed funding cuts for Chesapeake Bay cleanup programs.

President Donald Trump’s budget plan, released last week, reduces the budget for the federal Environmental Protection Agency by 31 percent. That includes a $427 million in funding to address regional pollution, such as the Chesapeake Bay protection efforts. The proposed budget would eliminate funding for the EPA’s Chesapeake Bay Program, which received $73 million from the federal government in 2016. > Read more.

Glen Allen ES principal receives REB Award


Melissa Halquist-Pruden, principal of Henrico County’s Glen Allen Elementary School, earned the 2016-17 REB Award for Distinguished Educational Leadership. The Community Foundation presents the award to four principals annually – one each from the school systems of Henrico, Chesterfield and Hanover counties and one from the city of Richmond schools.

The award recognizes principals who go beyond the day-to-day demands of their jobs to create an exceptional educational environment. The award stresses management and communication skills, and the ability to inspire, encourage and advocate for the school. > Read more.

Grant to help Hermitage H.S. upgrade CTE program equipment


Governor Terry McAuliffe announced recently that Henrico County’s Hermitage H.S. will be among 16 high schools and technical centers statewide to receive a grant to upgrade equipment for career and technical education (CTE) programs.

The program gives priority to challenged schools, Governor's STEM Academies and Governor's Health Science Academies. Each school or center will receive $37,500 to purchase new equipment and make other necessary improvements. At Hermitage, the funds will be used for precision machining equipment. > Read more.

Virginia raises a toast to George Washington’s whiskey


George Washington is recognized as the father of our country, but with a bill signed into law by Gov. Terry McAuliffe, Washington also will be recognized under another title – distiller of Virginia’s official liquor.

SB 1261, sponsored by Sen. Adam Ebbin of Alexandria, adds a “state spirit” to the list of the commonwealth’s official emblems and designations and crowns George Washington’s rye whiskey with the title.

The bill, which McAuliffe signed last week, highlights George Washington’s contributions to the culture of Virginia as “a native son of Virginia born on February 22, 1732, in Pope’s Creek”; “the first American president, commander of the Continental Army, and president of the Constitutional Convention”; and “a model statesman ... universally acknowledged as the father of our nation.” > Read more.
Community

Villa’s Flagler Housing wins national NAEH award


St. Joseph's Villa’s Flagler Housing & Homeless Services was one of three entities to earn the National Alliance to End Homelessness' Champion of Change Award. The awards were presented Nov. 17 during a ceremony at the Newseum in Washington, D.C.

NAEH annually recognizes proven programs and significant achievements in ending child and family homelessness.

Flagler completed its transition from an on-campus shelter to the community-based model of rapid rehousing in 2013, and it was one of the nation's first rapid re-housing service providers to be certified by NAEH. > Read more.

RIR’s Christmas tree lighting rescheduled for Dec. 12


Richmond International Raceway's 13th annual Community Christmas tree lighting has been rescheduled from Dec. 6 to Monday, Dec. 12, at 6:30 p.m., due to inclement weather expected on the original date.

Entertainment Dec. 12 will be provided by the Laburnum Elementary School choir and the Henrico High School Mighty Marching Warriors band. Tree decorations crafted by students from Laburnum Elementary School and L. Douglas Wilder Middle School will be on display. Hot chocolate and cookies will be supplied by the Henrico High School football boosters. > Read more.
Entertainment

Metro Diner to open second Henrico location


Metro Diner, a comfort food concept, will open its second Henrico location next month. The company is accepting job applications for its Libbie Place location at 5626 West Broad Street. The diner concept, known for its fried chicken and waffles, meatloaf, and shrimp and grits, will bring 100 new jobs to the region as it plans to open its doors in April.

The 3,500-square-foot diner located in the Libbie Place Shopping Center will seat more than 100 and serve classic comfort food staples with a twist, such as fried chicken and waffles topped with strawberry butter and a stuffed challah bread French toast with strawberry and blueberry compote. > Read more.

 

March 2017
S M T W T F S
·
·
·
·

Calendar page

Classifieds

Place an Ad | More Classifieds

Calendar

Calvary United Methodist Church, 1637 Williamsburg Rd., will host the Kars and Kustoms Auto Show from 10 a.m. to 3 p.m. There will be a prize for Best in Show, a bake sale, and raffle drawing. The fundraiser benefits the Youth of Calvary. Full text

Your weather just got better.

Henricopedia

Henrico's Top Teachers

The Plate