Oliver was diagnosed with a very rare metabolic disorder, Beta-Mannosidosis, the end of 2014 at the Mayo Clinic. We traveled to Minneapolis to visit the University of Minnesota Fairview Children’s Hospital in January, 2015, to discuss treatment; an experimental bone marrow transplant. His HLA typing was taken, and a few

We are now into week 2 of “work-up” and headed full steam ahead. Friday morning Oliver will go into the OR to get his central line and have a few more tests. “Mickey” Bear (see photos) has been a helpful way to explain his “noodle” and why he is getting

Today was pretty stressful with the whole insurance go-ahead. The U of MN hospital only submitted the request for transplant yesterday. (It was supposed to be submitted last Friday, and then Monday at the latest). To proceed with Chemo, as Oliver is slated for on Sunday, the doctors must have

Today was a long day for Mr. O. I am looking at him now, playing with his cars, tired, but happy. He is still pretty wobbly from the 3+ hour sedation today. We arrived at the OR at 6:15 am, and things moved pretty quickly from there. He had some

I am so humbled by peoples’ kindness. Oliver was up early, and although he is tired, he hasn’t been able to nap. Rose, a nurse from the hospital came a little after nine am to change Oliver’s dressing on his noodle. The plastic tape securing it is so sticky, and

Chemo has begun. And let me say, there is NO way a parent can be prepared for it verbally. Last night was his first dose. Dose number two is set to begin within the next half hour. ATG is an autoimmune drug helping to wipe out his immune system so

I am happy to report Oliver had a great night. We have found that he gets very tired and cranky from the pre-meds given before the ATG, but after a snooze he wakes up happy. And last night he woke up happy and with no fever! There were no fevers

Good morning,I am super excited to announce The Lost Enzyme Project has officially begun! The crowdfunding page went live last night! Please follow the link: https://bit.ly/lostenzyme to learn more. On the site there is a video that gives a great overview of the project and study design, as well as