Emotive short film highlighting the urgent need for newborn screening of SMA
Emotive short film highlighting the urgent need for newborn screening of SMA
SMA UK have worked closely in collaboration with Havas Life London, to produce a short film emphasising the urgent need for Spinal Muscular Atrophy (SMA) to be included to the UK Newborn Screening (NBS) programme.
With effective treatments now available in the UK, the difference between receiving treatment pre-symptomatically and after symptoms have appeared is profound. For some babies, early diagnosis and treatment within the first few weeks of life can mean the opportunity to grow and develop along typical developmental pathways.
This shot film features Ollie, a four year old boy who is living with SMA, the son of Ben and Amy Williams. In the film Ollie shares the things he’ll never get to do because SMA wasn’t included in the newborn screening test when he was born. SMA is rare and irreversible, but early diagnosis and treatment can change everything.
We recognise that the short film is highly emotive and may not reflect the experiences of everyone living with SMA, however the purpose is clear; to raise awareness among both the public and key-decision makers across the country to underline the urgent need for SMA to be added to the NBS programme without delay.
Ben Williams, Ollie’s father and SMA UK Trustee said:
“The pace of progress is infuriatingly slow – the evaluation has already taken more than 4-years, and no decision is expected anytime soon.
Whilst I have enormous respect for the UK Newborn Screening Committee and understand that we must have a robust process in place, I am concerned that they have lost sight of the unnecessary disabilities, impact to families, and in some cases death due to its lack of urgency.
I, like many other families who live with SMA on a daily basis, believe that it is unethical for the UK to continue to condemn affected children to a poorer quality of life by failing to screen for SMA.
Whilst Ollie may not be able to do many things highlighted in the film, we are very proud that he can advocate for the future of any child diagnosed with SMA with the hope of improving their life”