SPRINGFIELD, NJ — Last February, TAPinto Springfield Interviewed the Weissberg Family, Springfield residents whose son Holden is living with a rare genetic condition known as dup15q.
Dup15q is a duplication of a chromosome in the body that results in developmental delays in children, as well as cognitive impairment and symptoms of autism, all the way up to a full diagnosis.
Now, almost exactly a year after that initial interview was published, the Weissbergs again sat down with TAPinto Springfield to discuss what has transpired for Holden in the time since his story was first told on this site.
For Marc, Lauren and sons Reid, Holden and Jonas, the past year have seen some encouraging and positive changes in Holden's status and abilities.
"In the past year, Holden's made some great strides from a physical perspective," Marc said."He's been able to walk longer distances, independently and he can also walk with assistance up stairs. So in the past, maybe he could only walk 25 feet independently, I feel he can walk now a few hundred feet independently."
Marc continued, saying; "He's also done a better job of communicating his needs to us. Wether it be helping with a toy, food, drink, usually food."
While Marc noted the positives, he also said that like more than half of people with dup15q, Holden now has seizures, something that first started manifesting in January of 2020. While the family does have Holden on Medication to try and calm the symptoms, it is still too early to know if it worked. However, he has not had a seizure since he started his medicine.
One of the other, non-physical changes is that Holden is now being educated in a new location.
"In July, we moved him to a new school, and that has been a tremendously positive change for him. He now goes to the Midland school in Branchburg," Lauren said. "We're very fortunate that Springfield has been so accommodating and has allowed us to really choose a school that has the best possible fit for him.
"It's a live skills-based program, and they have access to a mini store, a post office, the have a mini bank a mini shop-rite. And he gets to go and practice these life skills ... he goes, and he practices waiting online, which is a life skill and sorting apples by color."
Lauren also noted that Holden has been using his stroller less, and has been using a communication device with his family more often. Along with his other changes, Lauren noted Holden went for Pivotal Response Training in October, which has led to him finally verbalizing a word, "more" and babbling more often.
Holden's brother Reid piped in, and said that in order to help his brother and others with dup15q, he has been fundraising.
"I did a Spartan Race on Oct. 12, 2019 and i raised $1,450 dollars for the alliance," Reid said. "And I ran for Holden. And I earned a shirt."
On the advocacy side, Lauren talked about what joining the dup15q alliance's board has been like over the past year.
"There's been a lot of really great initiatives going on," she said. "One of the most recent was announced is we're pairing up with the Chan Zuckerberg Initiative. They are very interested in rare disorders and doing research. So there's a lot coming out with this.
"This week being rare disease week, our director is down in DC, advocating and getting involved. I was able to get into Reid's school. Reid goes to Walton, and I was able to present to his second grade class. And it was really great to be able to it with the kids. They were so receptive and they asked great questions."
Lauren also noted the dup15q alliance has pared up with a foundation that advocates for people with angelman syndrome, which is the deletion, rather than the duplication of that particular chromosome.
When it comes to their hopes for Holden, Marc said that along with finding happiness, he would like to see Holden continue to progress emotionally and mentally.
"We always talk about happiness," Marc said. "And you want happiness in your kid no matter what their abilities are, so i can definitely go with that answer. But as I've seen Holden continue to progress in the past year, I would also want him to continue to progress with the physical progression. With the walking ... as well as jus the mental."
But for the Weissbergs, they know they are not in this alone. Lauren talked about the support she has seen from her school district in Union, and her home town of Springfield. In Union, the district's superintendent, Gregory Tatum, approved a dress-down day for teachers, in exchange for a donation to the alliance.
"The suggested donation was five dollars, but we are grateful for any donation," Lauren said. "So if you donated the money, you were allowed to wear jeans to work, because typically we're not allowed to. I don't have the final numbers from all the other schools, but in my building alone, at the high school, had 820 dollars as of the last count. 100 percent of that goes to the alliance, and we love being able to give that money to the alliance."
And in Springfield, Lauren said she saw an outpouring of support from her fellow residents.
"I have to say, I posted in the residents forum and the mom's page," Lauren said. "And I asked, 'will you guys put your kids in blue today?' The number of photos that I saw today was incredible, and that's how fortunate we feel to live where we are, and I just want to see more of that.
"I want Holden to always see the world through happy eyes, but I want to live in a world where everybody will always want to get to know him and be part of him, just because he's amazing."