Calling Holden's Heroes!

Our family truly believes that research is the key to infinite possibilities and we hope and pray every day that these trained medical professionals will make a breakthrough that will improve the quality of life for our son Holden and all of his Dup15q brothers and sisters. That is why we hold fundraising and awareness events. We need more people to know about Dup15q and help us fight for our cause! More than anything, we want for Holden to reach his full potential and live a happy and healthy life. When you ask if your donations matter, please know that they really do. It is what helps enable us to offer grants to researchers, which in turn can catch the eye of the NIH. It is what helps fund clinics so that Holden and others living with Dup15q Syndrome can receive care from medical doctors who understand this rare disorder. It is what provides support for families likes ours, who are constantly navigating the complex and challenging world of parenting a special needs child with a rare disease. This is why our family works so hard to raise money and awareness. Because our family will always BELIEVE!

Lauren, Marc, Reid, Holden, and Jonas Weissberg

Holden's Story

When Holden was born, he was such a good baby. He didn't wake up too often in the middle of the night for feedings, was quiet and content--the complete opposite of his big brother! We just assumed that after 2 years of not sleeping, we were finally being given a gift. We described Holden as being chill, with his serious demeanor and love for cuddling.

Although we were careful not to compare our two children, my husband and I could not help but notice that Holden was not reaching his developmental milestones. We were always open and honest with our pediatrician at the monthly visits, but our doctor never seemed concerned. As we approached his 1st birthday, the doctor did comment that Holden was not pulling to stand and recommended that we give him three more months before referring Holden for a PT evaluation. When Holden turned 15 months and could not crawl or pull to stand, we were given a referral for PT. Though we often wonder if we should have pursued an evaluation sooner, it seems that fate was on our side because a wonderful therapist was brought into Holden's life.

In June 2015, at 17 months of age, Holden had his PT evaluation and we were told that he had hypotonia. What did that mean? We had no idea, but we were sure one hour a week of PT was going to fix it. But it didn't. He could barely sit up without falling over. Holden's therapist, Dr. Nicole, recommended that we call Early Intervention (EI) for an evaluation and we soon learned that Holden had global developmental delays and qualified for OT, PT, Speech, Vision, and Developmental Intervention. As parents with full time jobs, we wondered how we were going to integrate all of these therapies in to Holden's life, but with the help of the fabulous owners and teachers in his daycare, we were able to work everything out--and the teachers even participate in the sessions! Holden spends many hours of his day working tirelessly to improve all of his skills.

Approximately three months before Holden's second birthday, we learned that he had a chronic fluid problem in his ears and could possibly have hearing loss, so tubes were a must. Fortunately, all of the problems stemmed from the fluid and Holden had perfect hearing…but now had to learn to hear and communicate after 22 months of not being able to do so. We were getting a handle on the therapies, but still struggled to find answers. Dr. Nicole, who we now refer to as the quarterback of our family, came to the rescue once again and recommended seeing a physiatrist and a neurologist. And thus began the scariest few months of our lives. Poking, prodding, MRIs of the brain--waiting with bated breath for phone calls from specialists with results. In December, we were told Holden's MRI was clear…so, we assumed everything was fine and he just needed time to catch up. Our poor baby had been through so much in such a short period of time, but there's no doubt this boy is a champion!

It was recommended that we see a geneticist--an appointment we would wait nearly 4 months for. We were not expecting anything to come up because the geneticist said it's extremely rare that you find something in the first round of testing. At our February appointment, our neurologist diagnosed Holden with Cerebral Palsy. We tried to come to terms with what this would mean for Holden and our family. Needless to say, it was an emotional time for us. We pushed for as much therapy as we could get to give Holden the best possible chance. Holden was and continues to be the hardest working little nugget we know. He tries so hard in all of his therapies and truly has the heart of a champion. We can rest assured that no matter what happened; Holden was going to have a fighting chance.

Just as we were starting to accept the CP diagnosis and begin to move forward, our genetic testing results came in. While we waited for our appointment, the nurse told us, "Nothing life threatening was found, but we have an explanation for the low tone."

On May 16, 2016, we learned that Holden had an isodicentric duplication of his 15th chromosome and was formally being diagnosed with dup15q syndrome. We were given paperwork about the Alliance and very little else. Now, here we are, with our newfound family who offers support, hope, and explanations. In such a short time, the Alliance has made a profound impact on our family, and we want to give back. We know that doctors have a lot of knowledge, and we continue to pray that doctors and researchers will work to find treatments to help make the lives of everyone living with dup15q syndrome the best it can possibly be.

On December 22, 2016, Holden was deemed eligible for special education services in our town under the "preschool child with a disability" category, and began a full day program on his 3rd birthday, in January 2017.

Holden can most often be found in the kitchen trying—with much success—to remove the safety locks on the cabinets. When Holden isn't at "work" (therapy), he enjoys watching Sesame Street, Mickey Mouse Clubhouse, music (he just loves his music therapist Haley), hanging out with his big brother Reid, and trying to sneak in to the bathroom to play in the toilet. Holden is also a champion cuddler and loves a good snuggle, which is why his nickname is "Snuggles" or "Snugs". He also enjoys eating and will sign for "more" with much excitement whenever food is around! Although he a "chill" fella, Holden loves to be tickled and thinks it's hilarious when we quack like a duck or fake sneeze and let a stuffed animal drop from our heads. Holden is a very big fan of the pool, even though he does more drinking than swimming :)

Holden is fiercely determined and surprises us every single day. We continue to hope and pray that he makes strides as he grows. As for Team Weissberg, we will be relentless in our pursuit to raise awareness about Dup15q and money for research, as we continue to believe that there will be a treatment for all of the Dup15q children some day in the not too distant future.

May Holden and all of his dup15q syndrome brothers and sisters remember: "Believe in yourself and all that you are. Know that there is something inside you that is greater than any obstacle."