Unite for Nash: WHS Support and Hope

Hi! I'm Lauren, better known as "Sissy." In October of 2023 my nephew, Nash Henry, was diagnosed with a rare genetic syndrome called Wolf-Hirschhorn Syndrome. His diagnosis shook our entire family and the uncertainty that came along with it was devastating.

Wolf-Hirschhorn syndrome (WHS) is a rare genetic condition caused by a deletion of the short arm of chromosome 4 (4p-). Nash's deletion is considered small, but it has impacted his life in big ways. At almost 2 years old, Nash isn't able to crawl yet due to low muscle tone. He has been on 2 different types of feeding tubes. He has to see several doctors a month, and most recently suffered from a seizure that put him in the hospital for several days.

While his journey hasn't been the easiest for him and his parents, Nash doesn't seem to let anything phase him and his playful personality can make you easily forget that he is dealing with such a confusing and hard syndrome. His bright eyes pay attention to everything. He loves his family, especially is big brother, Hudson. He loves to play with his toys and dogs, blow bubbles with his lips. He speaks lots of gibberish, hums, sings, and makes his presence well known! We couldn't love him more!

Since his syndrome is so rare, there is not a ton of information available, there aren't specialists that have answers, and a lot of things in his life have been by trial and error. There isn't a tougher little boy I've seen in my life, he pushes through it all. However, it has been unbelievably hard for his parents to navigate their way through all of this, and that's why we are doing this!

There have been very few resources for them to lean on throughout this process, but they have found a few gems.

May We Help is an organization that Nash's parents- my brother Brandon and his wife Courtney, recently came across and were able to get some equipment sent to their home to help Nash with every day tasks.

We have chosen this organization to give back to in honor of Nash Henry and National Wolf-Hirschhorn Syndrome Day on April 16th. Our hope is to raise money so that the generosity can continue for families like ours who need the help finding their way through diagnosis's that seem scary, but with love, help, and support from family and friends- don't seem unmanageable.

Thank you in advance for your giving heart, and on April 16th join us in wearing BLUE to celebrate Nash and his resilience.

It means the world!!