New Minister gives fresh hope for Callum

The new Minister is to meet with the mother of Callum McCorriston, a little boy from Limavady who may be the only person in Northern Ireland who could benefit from a revolutionary new treatment for a rare form of muscular dystrophy.

While Callum might appear to be a little boy with no serious health problems, his condition is already beginning to cause significant deterioration in his muscles - giving him gradually more and more difficulty walking.

His mother, Laura, said she has been encouraged by the response of new Health Minister Jim Wells to her calls for a new medicine to be made available in Northern Ireland.

“Obviously money is tight at the minute but I get the impression that he is a Minister who really cares and I’m really hopeful we will get the treatment for my son. It won’t cure him, but it could change his life for the better”, she said

Callum’s condition - known as Duchenne Muscular Dystrophy - will cause his muscles to waste away completely, leaving him unable to walk. In Northern Ireland, life expectancy for people with Duchenne is no more than 20-30 years.

There is no cure but a new medicine has recently been approved for use in the UK. It has proven effective for those whose condition is caused by a specific genetic mutation - known to doctors as a ‘nonsense’ mutation.

Little Callum is amongst the tiny group of children throughout the UK and Ireland who could benefit from the new medicine, known by the brand name Translarna.

While it won’t cure him of his condition, it could significantly slow down the steady muscular deterioration and drastically improve both life expectancy and quality of life.

His mother, Laura, has campaigned for the drug to be made available in Northern Ireland since it was approved for use in the EU and UK.

She has gained the backing of several prominent politicians from the North West, who have lobbied the now-former Health Minister Edwin Poots on her behalf.

Laura says she is engaged in a race against time to secure the treatment because it will no longer work once her son loses the ability to walk.

Earlier this week, the Limavady woman received a letter from Mr Poots which she described as a “non-answer” to her questions about the potential availability of Translarna. “It was the worst kind of letter to get. It didn’t tell me anything I didn’t already know”, she said.

After the appointment of Jim Wells as Health Minister, Laura contacted the DUP MLA directly, via social media website Twitter. She sent the new Minister a link to an online version of a previous story in the Sentinel outlining her concerns for her son.

“I sent him a tweet with a link to the story in the Sentinel and within just a few minutes he sent me a direct message back asking me to give him a ring”, she explained. “I spoke to him on the phone and he told me that he was aware of the situation, that even though he had thousands of things to deal with he was making this a priority.

“He said he wanted to meet me in the next few weeks and he said that he was going to be contacting the Chief Medical Officer to try and get an idea of cost.

“I’ve been really encouraged by the way he went about it. All those letters to Edwin Poots and nothing positive but then all of a sudden, after one tweet, Jim Wells has got in touch. He has been involved with an All Party Parliamentary Group on muscular dystrophy so he is aware of the problem and I really think he is going to help us. He told me he was well aware of the situation.

“He said he has thousands of things to deal with already in his new role but that he is going to do everything he can to help Callum, if it is possible. Obviously money is tight at the minute but I get the impression that he is a Minister who really cares and I’m really hopeful we will get the treatment for my son. It won’t cure him, but it could change his life for the better.”