Haris was born in August 2018, a healthy happy baby. Unfortunately Haris did not meet the midwifes’ expected milestones and was referred to specialists for further tests. Whilst awaiting the results for tests Haris was rushed to hospital in February 2019 and diagnosed with Spinal Muscular Atrophy Type 1. The biggest killer of toddlers under 2 in the U.K. With no treatment available in England at the time Haris was given just months to live.