Holden Weissberg

Holden Weissberg, 9, Dup15q Syndrome, Autism, Epilepsy, Sensory Processing Disorder

How would you explain Dup15q Syndrome, Autism, Epilepsy, Sensory Processing Disorder to a child?

Holden is 9 years old. He lives with a rare disease called Dup15q Syndrome.  This means he has an extra copy of the 15q chromosome and has 47 chromosomes in total, when we should have 46.  Holden is smart, just in a different way than we may be used to.  He isn’t able to learn as fast as other people and he can’t always do it the same way we do. Holden isn’t able to talk, needs a lot of help to take care of his needs, and has trouble staying safe.  One time, he strolled into someone’s house on Halloween! There are a few things Holden does differently from us, too. He may flap his hands, spin in circles while holding his iPad, scream or cry when he is excited or anxious, walk on his toes, and sometimes puts his hands on things he shouldn’t, including people. 

What would you want the world to know about Dup15q Syndrome, Autism, Epilepsy, Sensory Processing Disorder?

Living with Dup15q comes with a lot of challenges. Because of Dup15q, Holden has seizures, autism, sensory processing disorder, vision challenges, and he cannot speak using words. Holden uses pictures of real items, sign language, and an iPad to talk! This is how Holden communicates and we all understand. Sometimes he might get injured and has a hard time walking. He wears special leg braces called AFOs and they help him stay steady.  He also uses a wheelchair to get around because his body gets tired very easily.

What does it feel like to live with Dup15q Syndrome, Autism, Epilepsy, Sensory Processing Disorder? 

Holden has a lot of challenges, but he works really hard every day. He goes to a life skills based school all day and gets OT, PT, and speech.  Holden also learns a lot in his classroom! He can pick out his name, spell it, he knows colors, shapes, and can identify family and therapists in pictures.  At home, he has 3 hours of ABA therapy 6 days a week! He works really hard, but it helps a lot that he has therapy 18  hours a week.

What brings you joy?

What brings our family joy is watching the victories - big and small.  We love to see Holden doing all of the things we never thought would be possible.  We celebrate Holden’s passion, determination, and drive.  We celebrate the difficult days, which made our family stronger.  We celebrate the hurdles we have overcome.  We celebrate our friends and family who have become Holden’s Heroes. We relish the moments that others might not take the time to appreciate.  The cuddles, the eye contact, the high fives, and the dance parties.

Holden is our hero, our heart and soul, our motivation and inspiration, and the most amazing little boy you will ever meet.