Team Weissberg raises awareness, support for rare genetic disorder

Photo courtesy of Lauren Weissberg
The Weissberg family, of Springfield, at last year’s ‘Hope for Holden to benefit the Dup15q Alliance’ fundraiser.

SPRINGFIELD, NJ — The Weissberg family of Springfield consists of Marc, Lauren, Reid and Holden.

They refer to themselves as Team Weissberg. Together, they support their 3-year-old son Holden and others with dup15q syndrome, a rare genetic disorder that causes an individual to have extra genetic material from chromosome 15, causing a variety of symptoms, from autism to low muscle tone.

“As a result of this disorder, Holden has low muscle tone and cognitive impairment,” Lauren Weissberg told LocalSource in an email. “Furthermore, Holden also has global developmental delays, mixed receptive language disorder, autism spectrum disorder and sensory processing disorder. Holden did not walk until 33 months of age.”

This September, Team Weissberg will hold the second “Hope for Holden to benefit the Dup15q Alliance” fundraiser.

“The Dup15q Alliance supports and educates the families of people with dup15q syndrome as well as others not directly affected by it,” Weissberg said. “They support research and efforts to develop targeted treatments to help anyone living with dup15q syndrome, like Holden, reach their full potential.”

The event consists of an exercise class and basket auction. Last year’s event was held at CKO in Springfield, which offered a kickboxing class.

“We received donations from local businesses and larger corporations,” Weissberg said. “The event raised $9,600! This year, we see a need for a larger venue, so the event will be moved to Raymond Chisholm Community Center in Springfield. We are looking to do either a Zumba or dance-type class this year to allow for more participants. We are also going to try to increase the number of baskets from 75 to 100 and hope to raise $12,000 this year. I am also working with my place of employment to hold a dress-down day fundraiser on Rare Disease Awareness Day, which is Feb. 28.”

The Weissbergs find that most people don’t understand what it’s like to live with a disability. Despite their best efforts to raise understanding and awareness, it’s difficult for other to really grasp the idea of what their life is actually like.

“Marc and I both work full time and we had 15 hours a week of therapy to manage and we needed to work all of that in, while still trying to actively participate,” Weissberg said. “We also have an older son and we try hard to balance his needs and not make him feel resentful of the attention his brother is getting. Overall, this is definitely very hard and has challenged our family in many ways.

The entire experience is mentally, physically and emotionally draining. The money we pay for all of the services, doctors and therapies is something that is always on our minds. We have found that many people don’t know how to act around us or approach us. We also find that many people simply don’t understand the ‘why’ and ‘how’ of our lives. We are not as available as we once were, there are challenges associated with going out with Holden, especially prior to him starting to walk. Sometimes, you try to explain things to people and they don’t fully understand, despite your best efforts. You try make it clear that while the skills being gained are amazing, long-term we are still looking at having an adult disabled child who likely won’t progress mentally beyond that of a second-grader, if we’re lucky. Sometimes, we feel happiest in our own little bubble and try to do as much as we can all together.”

While there is currently no cure, there are a variety of treatments possible. The Weissbergs hope they will continue to make a difference in helping those with this condition.

“The friends that we have made in Springfield have been incredibly supportive and we consider them part of the village they say it takes to raise a child,” Weissberg said. “We have some amazing friends and family who remind us every day to continue to remain optimistic. The motto of the Dup15q Alliance is, ‘Believe,’ and this year, I am committing myself fully to this motto. I have every reason to believe that gene therapy is not out of the realm of possibility and I believe that my son is young and therefore, science has plenty of time to get it together and come up with a treatment or cure. But in the back of my mind, there’s that realist reminding me that I should be prepared for what is likely to be.”

COMMENTS

One Response to "Team Weissberg raises awareness, support for rare genetic disorder"

  1. Susan Courinos   February 15, 2017 at 6:49 pm

    My son is 7 years old and also named Hoeldon with dup 15q syndrome. We are going to the conference in California for 2017. Hope to meet you there if you go!