If you read my first blog you know that Trek has played a huge role in my wife and I’s life. His birth was the game changer and has forever altered my perspective on life and how I spend my time. One week ago my wife and I took Trek to a routine doctors visit because we noticed that Trek seemed a little small. What transpired after that seems like a lifetime ago now, but really it has only been a week. Four flights, three states, and countless hospital visits later we now know that my son, Trek Atlas Ingram, has a disease called Niemann Pick Type A. It is an extremely rare genetic disease that attacks the metabolic system, specifically it is a Lysosomal disorder. It is degenerative and there is no treatment.
I will write more in the coming weeks as we know more. No words can express the sadness that Chelsea and I have experienced over the last week. We love our son more than anything and the news has been difficult to bear. We appreciate your thoughts and words during this time. Know that Trek has lived a phenomenal life thus far and will have an exceptional life whether it be for two years or a thousand. He is the sweetest baby boy and my wife and I cherish every moment with him. If you have questions you may email, text, or call. I will answer you when I can. I know that Trek has made an impact on many of you in his life and is loved by all.
For now, I just wanted to say thank you for your thoughts and prayers thus far and keep in touch.
Thanks so much for keepin us posted. Poor sweet, little trek. This is all so heart breaking. We’re all hopin and prayin for u guys!
Thanks Rachel. You’re a good friend, thanks for the support.
Thank you so much for keeping us posted. I pray everyday and night for little Trek. He’s such a sweet and beautiful boy. All of your boys are so sweet. I think of you guys and hope every day for a miricale. Love you guys.
Thank you for sharing your beautiful family. I am a single mother of four small children and feel so blessed to have been given such a beautiful gift. My thoughts and prayers go out to you, your wife & your beautiful boys. God has given you a gift as well, Trek seems to be the voice of your higher faith by showing you how important your family is,which you already knew. But his illness has put your family in perspective with what is most valued, your love and time together. I will pray and think wonderful thoughts for all of you, but most importantly that Trek not only recovers but that he also feel very little if any pain. I lost a brother from cancer when we were younger. He tought us about love and faith, and how strong and resilient a child can be. I pray I never know what it’s like to have a sick child, I pray that you and family experience a miracle, i pray that Trek has a beautiful amazing life. It looks like what you’ve shared, he has certainly made your lives that much better. Thank you and bless you all.
I read the last post. I laughed and thought of the event that Jarrett mentioned the “scared him for life.” The inceedent that involved his precious shoes that we lost in the water. This is my defense; 1. The place of the alleged event was not Dallas, but Fort Worth Texas (it is amazing what 25 years does to a memory). 2. The shoes were not thrown into the water feature, one shoe slipped out of someone’s hand (some [Beth] believe it was my hand, others [me] remember it was Jarrett’s hand, and fell 10-15 feet down into the water. The edge of the water feature are drop offs, no way down to the water—ok, there is a way down to the water, but no way to get out of the water. 3. Once one shoe fell in, I decided that the second shoe should go and be with it mate (how romantic). 4. Finally, I thought it was funny—not a life changing event.
Jarrett and Chelsea,
I am just catching up on all of this – I have had a lot of adjustment these past 2 months. I cannot imagine how you guys are feeling.This is heartbreaking for sure. I will definitely be praying for you guys. What a cutie he is!