Pete MacEwen, a nurse with heart, provides infusions for children with rare diseases

Peter MacEwan Coram Infusion Nurse

PALOMA JUAREZ: Vaughn was born May 28th, 2016. He was born a hefty little kid. He was 9 1/2 lbs. And then about a week later we got a phone call saying that he had tested for an adjusted level for an enzyme that shows signs for Pompe's disease. Most children are diagnosed three to six months of life and don't usually live past 18 months.

BRIAN WAY: We actually got the full diagnosis. It was pretty devastating. Like, I just remember they kind of left us alone in the room. We kind of cried together and it took us a couple days. But then it turned into, you know, what do we need to do in order to try to help Vaughn and what are our next steps?

SCREEN: Pompe’s is a genetic disorder that results in muscle weakness. Currently, only 20 states screen newborns for Pompe’s. Early diagnosis is crucial to treatment.

BRIAN WAY: It was really frustrating to be told constantly like, hey, your expectations are way too high. He's going to be on a respirator at some point in time. He's not going to walk. Then you just need to start lowering your expectations.

PALOMA JUAREZ: So Coram was actually the third home infusion company that we met with. Vaughn was only nine months old when we switched to home infusion. Our care before Pete, on a scale of 1 to 10 was like a -100 and then with Pete, it's always been a 10 or higher.

BRIAN WAY: When we had infusion nurses before, Vaughn would like, run away and, you know, hide and whatever else.

PETER MACEWAN: They were so frustrated they were going to go back to the hospital for the infusions because they felt very uncomfortable about the people that were caring for their child.

BRIAN WAY: Coram and having Pete monumentally changed what we did. It was such a huge difference and it's such a weight lifted off of what we what we needed to manage and what we need to do in order to take care of Vaughn.

PALOMA JUAREZ: It felt like breathing again for the first time.

PETER MACEWAN: I have learned that the best way for families and patients to move forward is to have everyone working as a team.

PALOMA JUAREZ: When we have questions about new orders, he never hesitates to call a doctor for us. There's never a problem that Pete isn't willing to research and solve. That ability to really be able to communicate and engage with us and Vaughn was the game changer for us. You'll ask Vaughn. Vaughn, do you love Pete? And he'll go. He's my friend.

PETER MACEWAN: Why do you wash your hands? What do we say?

VAUGHN: Bye bye, germs.

PETER MACEWAN: He is an awesome kid. He has been so cooperative and helpful and I try to have him involved with as much care as possible. I've learned more from him than I have from just about any other patient I've taken care of. I feel so great about Vaughn's outcome because this is truly the one of the most involved families I have ever known in seeking the proper care for their child and they are charting new territory.

BRIAN WAY: Vaughn is on a pretty aggressive treatment plan. Basically, he's on a double dosage. It's improved his life and his ability to do things drastically.

PETER MACEWAN: It's a great privilege to be able to move people forward in their care. I don't think that we could go through finding someone else to be a part of our family the way that Pete has.

BRIAN WAY: He's the cornerstone of what we do for the treatment for Vaughn and without having him, it would change our life for the worse in a large way and I think we need to do everything we can to keep him around and doing everything we can with him.

SCREEN: In 2017, Pete was diagnosed with a rare form of Lymphoma. Just like his patients, he too receives infusions.