Fundraiser to find a cure for little Maisie

Little Maisie Cornally from Tullamore may have a rare and incurable autoimmune disorder but it hasn't affected her ability to smile and lift the spirits of her parents, her proud mum says.

In May, Maisie was diagnosed with Juvenile Dermatomyositis (JDM), a rare inflammatory disease of the muscle, skin, and blood vessels that affects two in one million children each year.

One of the most common symptoms of JDM is a rash, which Maisie had for over a year but which was diagnosed as eczema.

It was only when her mobility was affected that doctors began to realise that it was something more serious.

She is currently on a cocktail of drugs including steroids, a low dose of chemotherapy and anti-malerial drug to keep the condition at bay. One of only a handful of Irish children with the disorder, Maisie currently uses a wheelchair as she does not have energy to walk long distances and is in pain a lot of the time. As JDM affects sufferers' muscle tone Maisie's speech is also affected.

Speaking to the Offaly Independent this week after a fundraising campaign Moustaches for Maisie was launched, her mum Lauren says that at present the best she and her husband Joseph can hope for is that Maisie's will go into remission.

“Remission with this disease means that it is coming back you just don't know when. The only good thing is that if Maisie gets inot remission as an adult she can carry children [but] if it flares up when she is pregnant she might not be able to walk.

It can kill and that is the thing that is always in the back of our mind if she goes off this medication and goes into remission.

It comes back very fast, if it does come back. She'd nearly be to where she was or even worse and with her high dose of steroids her bones are very brittle so the the smallest fall could break her back.

“She is in a wheelchair when she is out and about. She is able to walk, but she is not able to walk any great distance.

“It does bother her, she is only coming on four. It's the mental affect on her that breaks our heart.”

While her condition does affect Maisie at times, Shauna says that for the most part it doesn't stop her from smiling and having fun.

“The one thing we say about Maisie is she never lost the smile off her face no matter has been going on with her. She is tough. If any child is going to find a cure it is Maisie. She is just that sort of headstrong child.

“...If Maisie doensn't feel sorry for herself I don't think we have any right to feel sorry for ourselves. She would put any adult to shame.”

To raise awareness of JDM and to raise funds to go towards finding a cure, Maisie's dad Joseph and ten of his friends are letting their inner Tom Selleck's shine this November and growing their. The man who came up with the idea for Moustaches for Maisie is Joseph's friend Conor Dillon.

All funds raised will go to the Cure JM Foundation, a non for profit organisation funding research into finding a cure for JDM.

“The whole idea is that if peopel can't donate at least share it on Facebook and Twitter and people can be aware of what to look out for,” Shauna says.

On the Moustaches for Maisie Facebook page there are details about how you can donate. There is also a touching video of Maisie, who turns four next month, describing JDM in her own words.