My daughter, Steph, was diagnosed at two days of age after they realised something was wrong at birth. They had noted large birthmark where the spine ends and the spine didn’t feel right. The brilliant paediatrician told me she would be doubly incontinent but that could be dealt with and that she would do everything else in her own way in her own time.

She will be 20 years old next month. She walked at 18 months but used a wheelchair for distance. Now that she is older, she walks just to get around the house and prefers the wheelchair for mobility when she goes out. She drives an adapted car, plays wheelchair basketball and has just started university as she wants to be a radio producer and do photography in her spare time.

Always encourage your children to do what they want to do and just make adjustments as necessary. I am so proud of my daughter and what she has achieved so far in her life.