Our Stories

These are our stories about how we found out and coped with the knowledge that our babies were diagnosed pre-natally with disabilities or life limiting conditions.

We present our stories and our children’s stories to you and hope that they will encourage, support and inspire parents in similar situations. For some of us, our children died after short lives. We want to promote an ethos of welcome, care and supports for families of children with life-limiting conditions and special needs.

  1. Anna-Kate’s Story – She lived for an hour and a half with Patau’s Syndrome
  2. Simeon’s Story – He’s living with Hypoplastic Left Heart
  3. Luke’s Story – Of misdiagnosis
  4. John Paul’s Story – He lived for 17 minutes with Anencephaly
  5. Laura’s Story – She lived for seven months with Edward’s Syndrome
  6. Grace’s Story – She lived for ten weeks with Patau’s Syndrome
  7. Lily – Diagnosed with hypoplastic right heart syndrome
  8. Maite – Lived for an hour with Trisomy 16
  9. Louise’s Story – Living with hypoplastic Right Heart and Dandy Walker Syndrome