6 year old denied crucial drug due to age
Belfast mum's crusade to secure treatment for her daughter
Last updated 18th Feb 2017
Belfast mum Lisa Warren was told her daughter Mia couldn't access a potentially life saving drug, as the age criteria was one year old and under.
After months of campaigning, the Health Minister Michelle O'Neill finally contacted her to say Mia could now access the treatment.
The six year old suffers from Spinal Muscular Atrophy Type 1, a terminal condition which causes severe muscle wastage by affecting the motor nerve cells in the spinal cord.
The result leaves patients unable to hold their head up by themselves, struggling to walk, breathe and swallow.
The drug nusinersen is used to treat the disease and has been branded as 'life-changing,' helping patients to gain more muscle movement. This can help sufferers to support the weight of their head and potentially walk.
Our Lives Matter
Lisa joined with a number of other mums in Northern Ireland whose children were suffering from the disease, to campaign for the drug to be made available here.
Together they formed a crusade and fought to bring nusinersen to Belfast.
After numerous attempts to contact the Health Minister Michelle O'Neill, the parents of Caoilte Fitzsimons, Noah Collins and Mia were finally told on Wednesday their children would have access to the drug.
'Disgusted at the Health Service'
While her daughter was suffering in hospital before Christmas, Lisa overheard that another child with the same condition was currently being treated with the drug and was onto their third injection.
Lisa says she was horrified:
(I was) "Completely angry and disgusted at the Health Service and the Trust." She said.
"We weren't told, we weren't made aware, we had been waiting and we automatically thought we were going to get notified of the drug being available in Belfast," she added.
Lisa said the families felt robbed of their access to treatment.
"To find out that another child was receiving a treatment and your own child was being left out, we just felt that the kids were being discriminated against."
Hopes for the future
The families' crusade to make nusinersen available to children aged over one began in January.
Lisa says the good news couldn't come soon enough.
"It has been really, really hard." She said.
"We were constantly writing email, letters, phonecalls, we had tried to contact the Health Minister and we were getting nothing back.
"It's just been such a hard fight and a struggle and the three families pulled together and we finally got the good news on Wednesday," she added.
Mia's treatment is due to start in April 2017.