Woodbury, MN

The Sabo Family

Bohdie Joseph Sabo
Noonan-like syndrome with loose anagen hair, SHOC2 mutation.

Our sweet Bo was born with a variety of different health concerns, as well as acquiring a few since he has been born. (Genetic Disorder/ Immunodeficiency/ Hypogammaglobulinemia/ Growth hormone deficiency/ ASD/ Gastrostomy tube/ duodenal hematoma (due to procedure complication). 

Bo has had a rough go of it his first year on this earth. He has been in an out of our local Children's hospital more times than I can count and has gone through things that no child should have to go through, ever. However, he is resilient and gives us hope and strength every single day. His big brother Auggie (4) has really helped to bring us through the hard times, making us laugh and reminding us that, "it will be ok!!" He is the best big brother and very protective of his Bohdie. 

Unfortunately, due to Bo's immune-deficiency, he is unable to attend daycare at this time. The choice was between me going back to work to pay for care for him at home, or staying home with him (not having to pay someone else) and working casually when time permits. This has been a big change for our family as we have always (and very fortunately) had two full-time incomes until now. 

No one ever thinks that something like this (piles of medical bills, debt, unable to work, etc) is going to be something that happens to them. We are beyond fortunate to have health insurance and such amazing care for our little guy, but unfortunately that doesn't always take away from the stress and anxiety that our family (and so many others) feel on a day to day basis. 

For anyone that donates, THANK YOU.

For anyone that prays or sets intentions for us, THANK YOU.

For anyone that is in the same situation as us, WE ARE HERE FOR YOU.  

"We do not know what God has planned for us, but we continue to trust Him because we know His plan never fails." 


Bo's Update 12/17/19

Sweet Bo is still having trouble gaining weight, even with upping his calories through his g-tube. However, we are pretty pumped that we have managed to stay out of the hospital since October (woo hoo- knock on wood!!)

We had a meeting with a pediatric dentist today. Children SCHOC2 can have a lot of dental issues, so we knew we had to get him in to get checked out. Fortunately, we received good news- no need for any interventions as of now and that means NO ANESTHESIA OR SEDATION. A total win in our book.

Bo has a few upcoming appointments in January and February: ENT for some obstructive breathing, etc., Endocrine for some more in depth metabolic studies and possible growth hormones, Genetics for follow up and further testing and GI to follow up on his g-tube and feedings. We are hoping to at least get him eating more on his own soon, but this has posed to be a bit of a challenge for Bo after being on TPN for a prolonged amount of time this summer/fall. 

That's all for now. Thank you for your continued support. We will be sure to post any updates as they arise (hopefully lots of good ones!!)