Rowan Jack has never really been home for Christmas.

In fact, he's never really been home at all for more than a couple of days at a time.

The three-year-old suffers from a rare disease that prevents him from developing muscles, and because of that he's spent most of his life at Bloorview Kids Rehab.

"As a mother, it's very hard," said Rowan's mom, Lisa Jack.

"I'd like to be able to take him to things with us, be a family, do things together."

One of things is naturally spending the holidays together, unfortunately accomplishing that won't be anywhere near that simple.

"It was very hard holding him, trying to hold him like a baby," Jack recalls. "You can't because of all the tubing."

Rowan's allowed to come home for one weekend a month under close supervision, but to bring him home for good the Jacks need to build a $100,000 addition to their home.

They have the blue prints, just not the green, though it's not for lack of trying.

"Everywhere we go for help, there's always some kind of let down," Lisa Jack said.

The good news is that this year, Rowan actually will be able to spend Christmas at home, or at least a portion of it.

There are even some presents under the tree for him.

But later that night he'll have to return to Bloorview, leaving his parents with just one Christmas wish.

"That I don't have to say goodbye to him, and see him cry when we leave," Jack said.

To contact the Rowan family about helping with Rowan's room, email rowansroom@yahoo.com.