As part of Carers Week, FAST UK Trustee Sarah recently appeared on BBC Radio Wales to share her family’s experience of Angelman syndrome and the impact it has had on their lives.
Sarah spoke about her son, Ivor, who was diagnosed with Angelman syndrome shortly after his third birthday. Now six years old, Ivor faces many of the challenges associated with the condition, including being non-verbal, mobility difficulties, disrupted sleep and the risk of seizures. Sarah explained how Angelman syndrome is caused by a change affecting a single gene, demonstrating how one tiny genetic difference can have a profound impact on a person’s life.
Reflecting on the diagnosis, Sarah spoke honestly about the emotions many families experience, including sadness, grief, anger and the question of “why us?”. She explained that Angelman syndrome is not inherited and usually occurs as a random genetic event, leaving families with no warning that their lives are about to change.
While caring for a child with complex needs can be demanding, Sarah also highlighted the joy that Ivor brings to those around him. One of the most recognisable characteristics of Angelman syndrome is a happy and engaging personality, and Sarah described Ivor as a wonderfully happy little boy who brings so much positivity to their family.
Alongside working full-time and caring for Ivor and his two older sisters, Sarah is also a Trustee of FAST UK, helping to support other families and advocate for greater awareness, research and support for those affected by Angelman syndrome.
A particularly moving part of the interview focused on the impact of Angelman syndrome on siblings. Sarah spoke about her daughters and the guilt many parents can feel when balancing the needs of all their children. However, she also shared the positive side of the sibling experience, describing how much the girls love their brother and how proud they are of him. Sarah believes that growing up alongside Ivor will help shape them into compassionate, understanding and remarkable young people.
We are incredibly grateful to Sarah for sharing her family’s story and helping to raise awareness of Angelman syndrome through BBC Radio Wales.
Listen to Sarah’s interview below.
