Theo was first put on a drug called Spinraza, requiring "traumatic" monthly spinal injections. In March 2021, Natalie learned the NHS would be funding a new drug. Theo was among the first babies eligible for Zolgensma.

       But he entered intensive care on July 4 - yet he needed to be off the ventilator for at least 18 hours to get the drug with his November birthday deadline looming. Natalie, from Warrington, said: "So from July to October, each day we took him off it for 20 minutes, then an hour. With the clock ticking, doctors, "surprised" at the progress, gave him the all-clear to get the drug. Natalie said: "For that money to be spent on our child is just incredible."