Don’t halt miracle drug that has saved our little Ella Rose

I WAS thrilled when my great grand-daughter ella rose (pictured) was born. As the months went by, we all noticed she was not progressing: she was unable to roll over, sit up, or move her limbs very much. When she was diagnosed with spinal muscular atrophy type 1, we were shocked to be told she was not expected to live past 18 months old. We were told an experimental drug, Spinraza, was being tested at Great ormond Street hospital for Children, but as she did not live in the postcode, she would have to go on a waiting list. how can there be a waiting list when the prognosis is 18 months? this drug is available in other countries, so friends and family did lots of fundraising to pay for ella rose to go to Paris to have four doses of Spiranza. the results were amazing. Newcastle hospital has continued to treat ella and she has received two further doses. She can now sit unaided, roll over and hold her head up without assistance. however, NICe (the National Institute for health and Care excellence) has decided this drug should no longer be available in england and Wales to new patients. Surely all babies should be given the same chance at life if treatment is possible. ella rose is two today and has the chance of celebrating many more birthdays thanks to this miracle drug. I implore health Secretary Matt hancock to overrule NICe’s decision and allow Spiranza to be prescribed to those who need it.