Jesy Nelson announces that her twins have been diagnosed with SMA1

Jesy Nelson has been speaking out in recent weeks to raise awareness about SMA Type 1 (Spinal Muscular Atrophy). After a traumatic pregnancy and lots of time in hospital, Jesy Nelson has announced more challenges about her daughters. After noticing that they were not feeding adequately and their legs were not moving in the same way other babies legs moved, she took them to various doctors to get checked. After a lot of stress, many appointments and on occasions, not feeling heard, Jesy has finally got some answers. Her daughters have been diagnosed with a rare genetic disorder that affects around 70 babies a year in the UK – SMA1. SMA is a severe disorder than impacts muscles and leads to a progressive loss of movement and eventually paralysis. She warns of signs such as floppiness, inability to hold their head up (poor neck strength), rapid belly breathing and issues with feeding due to poor swallowing ability.

The life expectancy for SMA babies is only 2 years without medication but the medication can delay the effects of the muscle degeneration and prolong life. Jesy is now campaigning for SMA to be checked for during the newborn heel-prick tests to ensure that infants can receive medication as soon as possible to delay the effects that SMA can have on the muscles of the infant. If a diagnosis happens early, medication can be given immediately and individuals can go on to live a normal life. It is critical that babies are checked early and so Jesy is working to ensure that this becomes policy from the Government.

Jesy Nelson announces that her twins have been diagnosed with SMA1

1. Why is SMA not already tested for in the newborn checks?

2. How long will it take for a change to come about?

3. Why is screening so important?