Our Son has SSADH

Last year I posted about our son Boston and his rare disease called SSADH. February 28th is rare disease day and we asked readers that if they had benefited from the information we put out on this site, for free, to please consider donating to the SSADH Foundation in pursuit of a cure for Boston and the other 500 children diagnosed with this extremely rare disease. I am please to announce that a good number of you stepped up and we were so grateful for your generosity!

We are now here again, a year later, and I’m making the same request. I know that we are in funky times, and financial situations are all over the map. However, if you have benefited from the information in this site, would you please consider making a donation toward our son’s cause? No donation is too small or big and every bit counts and is appreciated.

The donation link is at the bottom of this article and this year our company is doing a match on donations up to $5,000!

For those that don’t know about Boston’s condition, SSADH makes life more difficult for kids with this disorder. The severity of the symptoms come at varying levels, but for Boston, fine and gross motor skills are delayed, cognitive processing response times are delayed, and memory/focus is difficult for him. Basically, the daily tasks that you and I take for granted require effort, focus, and a lot of work for Boston. Other kids with this disorder cannot walk unassisted, or may not be verbal in their communication. The one common theme with all kids we’ve met with SSADH is that they have some of the biggest hearts we’ve ever seen. They love, are innocent, and are caring! The goal is to help these kids so that they don’t have to work so very hard for things that neuro-typical people do with ease.

For those that virtually met Boston last year, here is an update on our son’s journey!

Updates on Boston

Like many other families, the parents caved and fell into the COVID pet trap. We got a dog and cat from the rescues and are now proud owners of Waffles and Meowserton (Boston named the cat).

Waffles, Boston, and Meoswer sitting in Boston’s room.

Up until COVID, Boston had been continuing to take drum lessons and practiced at home. He also is active in Muay Thai on a weekly basis and earned his orange belt this year!

Boston practicing his drums in the garage

Boston also received a very prestigious honor of receiving the “Spirit of Pathway” award at his school!

Boston receive the Spirit of Pathway Award! We’re so proud!

Boston decided that he wants to be a “Movie Maker” when he grows up. He started the school year at age 10 but just turned 11 two days ago!

Boston on his first day of 5th grade

Boston, as always, is close with his sister Charlie and they’ve made the most of the COVID shelter-in-place orders by playing in the yard, or board games, or jumping on the trampoline. And yes, the occasional screen time.

Boston and Charlie braving the rapids of our pool
Boston and Charlie playing Sorry with Dad
Boston and Charlie eating smores with mom

This week, Boston just started working out with daddy and so far he really enjoys it! Plus, in the middle of COVID last year, Boss got a new haircut from dad!

Boston and daddy working out
Boston and daddy hiking with his new mohawk

Throughout all of the daily challenges our son faces, he does so with perseverance, humor, and a good attitude. He always gives people the benefit of the doubt and we, as a family, have learned how to be more loving people because of my son.

Boston being Boston

Business Resource Center, Inc. & NPG Match – $5,000

This year, BRC will be matching the first $5,000 dollars in donations. Our goal is to hit the $5,000 mark so that after the match, SSADH will receive $10,000 toward finding a cure!


Please consider giving to the SSADH Foundation today. 100% of the proceeds go directly toward research to find a cure for this rare disease. We appreciate your support and prayers!

Donation Link

Please click here to donate.

Thank You!

Thank you so much for your support and may God bless you and your family this year!

Boston at IHOP with daddy