Leo

For our family, Rainbows has been absolutely phenomenal. From the moment we first visited, we knew it was the place we wanted to be.

We couldn’t imagine life without Rainbows, it is a place where we feel so safe.

Our two-year-old son, Leo has the most severe form of Junctional Epidermolysis Bullosa – a group of genetic conditions that cause the skin to be very fragile and blister. We are often afraid to cuddle our baby for fear of hurting him.

His condition is so painful and Leo doesn’t understand. His body doesn’t have Laminin 332 – which binds the layers of skin together. We were told by medics that we need to wrap him up in bubble wrap.

Just normal daily life is a minefield of dangers for Leo. We have to be so careful even picking him up and holding him. If he is lifted under his arms, that can shed his skin and cause open wounds. We have to take extra precautions to go to the park as friction from a slide or lifting him in and out of swings, would cause him to blister.

Terrifyingly, his body is also in danger of internal blistering. We don’t want to think about that.

Despite all of this, we try to let him be as much of a child as he can be, but we really have to be careful. Every time he closes his eyes, he is at risk. He has had corneal abrasions three times in his little life, once he couldn’t open his eyes for two weeks. And there are so many little things you don’t think of, like all of his toenails have fallen off. We have managed to save his fingernails so far.

At diagnosis, we were told Leo may have a life expectancy of two-years-old. We didn’t think he would survive his first birthday or Christmas. Now we have so much hope for him. He is doing better than expected. They told us we would never ever be able to pick him up, that he will struggle with food, that he won’t make his milestones, that he wouldn’t be able to walk without blistering. But he is defying that.

He might not follow the pattern he was meant to and we will still live in fear. It is just a wait and see. When he has a flair up, we don’t know what may happen. And that is frightening.

We have to be by Leo’s side pretty much 24/7 as he can have flare ups every 20 minutes. When he gets blisters, they have to be lanced and dressed immediately.

In a life where we have nothing but uncertainty, we take solace at Rainbows. At Rainbows we can talk to people who really understand and who want to listen. There are parents who are in similar situations with poorly children, who just get it. We feel we have so much support there.

A lot of the time, life is so overwhelming that Rainbows is a release for us. We can just get a coffee and talk to supportive people, while knowing Leo is safe and cared for. It is just an amazing place.

Leo’s older brothers, Jay and Charlie, love going too and they can get to do normal things like swimming in the Hydrotherapy Pool. Sadly, Leo can’t swim with them. But the kids can be kids, and we can watch knowing they are safe. Leo loves being in the Music Room and the Multisensory Room.

Rainbows gives us all taste of normal. We don’t know our future and we all want to protect Leo. We have to live day to day, and we have been told by the specialists that he is one of a kind.