Isaac turns 2
Local child battling, overcoming rare syndrome
What a difference a year makes.
As Isaac Corbett celebrated his second birthday Oct. 4, his parents marveled at how far he has come since he was diagnosed with Hurler Syndrome last fall.
"One year ago, after receiving the diagnosis, we had very little hope for our child," said Isaac's father, Gabe. "One year ago, he was going backwards, and probably faster than we thought."
A rare genetic disorder, Hurler Syndrome generally takes the lives of its victims at only five to six years of age without treatment. But Isaac was diagnosed at a young enough age for doctors at Duke University Medical Center to perform a bone marrow transplant.
After living seven months in Durham, N.C., while Isaac underwent chemotherapy, multiple surgeries, and the transplant, the Corbett family has returned to the Richmond area. "We still head down to Duke about once a month for an infusion," said Isaac's mother, Natalie, "and visit the clinic at MCV every two weeks for a blood draw and exam. . . We no longer have to give him daily infusions, only oral suspension medications."
"We have one resilient child," remarked Gabe.
Not only is Isaac progressing well with his weekly physical and speech therapy, but he is crawling, pulling up to a stand, and learning to climb stairs.
"We also enjoy witnessing his problem-solving skills in action and relish the fact that his mind is functioning well," said Natalie. "When asked what sound a cow, sheep, horse, and dog make, Isaac can respond appropriately.
"However, I am still waiting anxiously to hear him say 'Mama,' rather than continue to be associated with a cow – as Isaac says 'moo' instead."
Although Isaac's parents must take special care to guard against head injuries as Isaac learns to walk, their freedoms are expanding. They can invite a few healthy people into the home at a time, and even bring Isaac inside some other homes.
"We can now go to outdoor restaurants, be in the sunlight 10 minutes a day, and have him try people food again," said Gabe. "What most parents experience in one year of development, we’ve stretched over two and counting."
The Corbetts said they could not have come this far without the support of many friends and family members, including Gabe's mother, who helps with Isaac several days a week, and Natalie's mother, who lives in the Midwest but visited for several months. Other relatives and friends have helped look after Isaac, supplied food, assisted with household tasks, and volunteered in the community to raise funds for Isaac’s care.
For his recent birthday party, about a dozen family members filled the house to watch Isaac eat some cake.
"We had a blast," said Gabe of the occasion. "But he's very picky, [and we] ended up having to put his prized yogurt melts in and on top of the cake for him to even try it."
Following the birthday party, the family packed the car and headed to Duke so Isaac could get his scheduled infusion the next morning. "I guess it's just our life right now," said Gabe.
"There is a lot to keep track of with this busy little guy," Natalie said, noting that Isaac still faces surgeries to correct skeletal abnormalities in addition to the constant monitoring and medications.
"But he amazes us daily with his progress and determination."
To view a video of photos of Isaac's first two years, visit http://www.youtube.com/watch?v=33FKORU0Wa8 To re.ad the original story about Isaac ("New Life for Joy Boy," in the March 15 issue of the Citizen), visit http://www.henricocitizen.com/index.php/news/article/05477
Citizen Staff Reports 05/16/2016
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