Mikey was a beautiful, smart and healthy little boy.  But just after his second birthday, everything changed.

First, Mikey started with a rash on his face.  The doctor said it was fifth disease.  We went back because Mikey was getting muscle weakness.  He couldn’t sit on the floor to play with his toys or even go upstairs to see papa and nana, which he always did.

The doctor kept telling us it will go away.  We went to another doctor and they told us the same thing.  They even told us that they couldn’t refer him to a rheumatologist because he was still walking.  I decided that wasn't an acceptable answer.  I took him to the ER.  After all that we got referred to a rheumatologist.

We went a few days later and they told us that Mikey had a rare auto-immune disease called Juvenile Dermatomyositis, a form of Juvenile Myositis (JM).  When we were told this we were very upset.  We had no idea what to expect.  We told ourselves that we would get Mikey through this. He was one strong little boy.

MikeyThen that’s when something went wrong.

Mikey went into the hospital for 3 days to start his treatment (steroids and methotrexate).  But during this time Mikey had possible pneumonia. The doctors weren’t sure so they treated it as pneumonia and continued with his JM treatment.

One month later on April 2, we were back in the hospital.  Mikey was sick again. (We told the doctor he was sick again, during his infusion but we were told he was fine and continued with the infusions.)  He was admitted into the hospital because he couldn't breathe and his heart rate was through the roof.

It took over a week to finally know what Mikey had.  He had PCP pneumonia.  At this point Mikey was in the ICU on a ventilator and in a drug induced coma.  He was then put on ECMO because his lungs couldn’t handle the pressure of the ventilator any more.  ECMO is a lung bypass machine.  It would give Mikey’s lungs a chance to rest.

About a week into being on ECMO we saw some improvements.  We thought he was going to come off ECMO.  But when it came time to wean him off, he couldn’t tolerate it.  His lungs were just too sick.

We were finally told he could be put on the lung transplant list.  It was a very tough decision to make. If he did get the transplant in time he could suffer a lot.  Lung transplants are the most difficult to do. We decided to at least put him on the list then we would see how things went. We wanted him to have every possible chance.

Mikey’s condition started to get worse.  He was already on ECMO for 40 days. That was the most that they had any patient on it.  So, if anything came up they weren’t sure how to handle it.  He was already starting to have some complications.  We didn’t want anything to happen that could cause Mikey to suffer.  

We had to come to the decision to let him go.  

This is a decision that no one should ever have to make.  How could any parent make this decision?  We put it off for a few days.

Finally that day came.  I think that Mikey told us that it was time.  He fought so hard the whole time, but his numbers were starting to drop.  We called our family and friends to come and be with us.  Mikey was with everyone that he loved.  Later that night Mike and I were able to be alone with Mikey.  We talked to him and told him how much everyone loves him.  I held him while the machines were turned down.  It was the first time I was able to hold him in almost 2 months.

At 2:20 am on May 27, 2005 Mikey passed away.

Written by Mikey’s mother, Ann Marie

Mikey's BrothersPostscript: Mikey’s family has become very involved in Cure JM, attending the Cure JM National Conference, raising funds for research, participating in voting and fundraising contests and more.  Mikey’s brothers proudly wear their Cure JM shirts to raise awareness of juvenile myositis.

Red Balloon Event Photos