5 June 2019 - The last time the Rotorua Daily Post spoke to Rotorua mum Anna Sutherland, her son Heath was about to finally get his super powers.

Heath was diagnosed with Type1 Spinal Muscular Atrophy (SMA) at aged 15 months.

The result of a deficiency of protein called SMN, the condition affects a child's muscular development - the earlier the symptoms are noticed, the more severe the type.

In May last year the Sutherland's believed their dreams had come true after Biogen, the company that makes the drug Spinraza, decided to provide the drug free of charge to Type1 SMA patients in New Zealand under the age of 18 through its extended access programme.

Read New Zealand Herald article