Facing Bereavement

Sadly, families with a baby with SMA Type 1 or SMARD1 may face the loss of their child. Our short information sheets may help parents during this very painful time.

There is emotional support and practicalities to think about and often brothers and sisters who need support. Families may also want to think about organ donation .

Our support services team is always there for families after a bereavement and sources of support are listed in our leaflet ‘Support if you are Bereaved’.

You can also read our 'Family Experiences of Bereavement' leaflet which shares the experiences of families whose child with SMA has died and how they coped with their grief and bereavement.