01/04/2023
Here is a little about Sagen and his journey from his mom:💙💙💙
When our son Sagen turned 6 months old we were made aware of some developmental delays. He wasn’t crawling, sitting up on his own, or even rolling over. After his evaluation, we were told that he was still at the developmental stage of a newborn.
We immediately started him in therapy, while actively pursuing answers as to what was causing his delays. MRI’s, X-Rays, 2 surgeries, and 3 rounds of rigorous genetic testing would be our story for the next year. Multiple visits, and lengthy travels to see specialists, neurologists, and geneticists, yielded no answers. Yet through all of this, Sagen continued therapy up to 8 times a week.
Just before Sagen’s second birthday, our answer finally arrived. It was discovered that he had a mutated gene (TCF4) found on his 18th chromosome, which resulted in a diagnosis of an extremely rare disease called “Pitt Hopkins Syndrome.” We were told he would never speak, possibly never walk, and never be able to live independently.
This news absolutely devastated us. We never in a million years expected to hear that. In an instant, our son’s future seemed hopeless. This news changed how we viewed life, and we began to navigate this new, and unexpected chapter.
However, this news made us all the more determined to prove everybody wrong and surpass everyone’s expectations. So despite the crippling news, we weren’t giving up and continued on with therapy.
Because his disease is so rare, there are many grey areas when it comes to helping him. We don’t have enough research to find many concrete solutions to his problems. However, therapy has been the only thing that is a staple for him hitting milestones and improving his quality of life.
Through many avenues of therapy, from PT, and OT, to intensives in Los Angeles, Equine, and DMI, Sagen has spent the last couple of years surpassing expectations and crushing milestones. In September of 2022, Sagen took his first official steps, and his life of walking has only taken off from there. It was such a thrill to see a goal that he has worked on for so long finally become a reality!
Sagen still remains nonverbal today, and from what we know of PTHS, may remain so for the rest of his life. But Sagen has much to say. We earnestly continue in speech therapy at Turn Center and at school with the help of his wonderful teachers to crush further goals of helping Sagen communicate. Life as a non verbal person is incredibly difficult. He can’t tell us the things he needs, much less the things he wants. Helping him, and us learn how to communicate with him is so vital to his quality of life.
We’re so thankful for all of the love and support that we have received over the years. Sagen is the best kid with an uphill battle every day. But we have such an incredible community, here at home and abroad that have hoisted Sagen and his journey on their shoulders. From prayer, to awareness, and even at times assistance with financial burdens that come along with a circumstance like his, we are continually blown away by how much love people are willing and eager to pour out on him.
Thank you all for your love and support. We find ourselves beyond words at how vast and wonderful it is!
