Safia's Story

Safia is supported by Roald Dahl Nurse Natasha. Safia is a cheeky, fun-loving 4-year-old who loves sensory toys and hearing people’s voices as they talk and read stories to her.

Throughout Faatimah’s pregnancy and at birth, Safia’s head was smaller than average. Safia was put on a waiting list to see a paediatrician and, at around three months old, she started making unusual movements. On seeing these movements, Faatimah’s GP sent her straight to A&E where Safia was admitted, put on oxygen and referred for a range of tests, including an MRI. The family was told that the unusual movements were seizures and Safia was diagnosed with Lissencephaly – a rare brain condition that affects her whole body. Safia’s mum Faatimah says, “The main struggle was being told that Safia wouldn’t have a long life, learning to accept that. The seizures are the hardest now that I’ve overcome the acceptance, she’s so little and you feel so helpless, like you can’t do anything, and she can’t tell me what’s wrong.” Safia has regular seizures and is fed through a tube. She is unable to walk or talk, needs support to sit and stand and is visually impaired, however, she can hear. Faatimah explains, “She has her own little personality, she can be very cheeky at times and we’ve learnt her own little language of screaming and being happy, it’s a different way of communicating. She loves people engaging with her or just someone new talking to her or reading her stories.”

Meeting their Roald Dahl Nurse Specialist

The family met their Roald Dahl Nurse, Natasha, very soon after Safia’s diagnosis. They instantly felt that she was a positive presence in their lives, at a time when they felt like their world was crashing down. Faatimah commented, “Natasha helped us with everything. She could answer any questions we had and went above and beyond…I remember this quite vividly; I’ll never forget it. She wrote down on a piece of paper all the specific support we could access and said we could contact her about anything. The doctor said she couldn’t do her job without Natasha, she’s just amazing, she knows so much about everything!”

Support from their Roald Dahl Nurse

With their Roald Dahl Nurse’s help, the family have discovered other communities and therapies to support Safia. She has also provided a central point of contact to support the various hospitals and consultants managing Safia’s condition, always available to explain anything they’re unsure of. “The minute I met Natasha, I knew what was available to me and not many people did. The most important things she pointed out were physio and language therapy. Although I don’t speak to her every day, I consider her a friend. I’ve had another child in the meantime, and she’s been on that journey with me. She’s invested in us as a family.” Faatimah goes on “I like the support and reassurance of knowing there is someone there I can rely on, that I could go to and I trust. Trust is probably the biggest thing; you know that if she says she’ll do something, she’ll do it. How would I describe Natasha? There are not enough words! She’s amazing. An angel.” The Charity Connection Roald Dahl Nurses are established by Roald Dahl’s Marvellous Children’s Charity. The help and support that Natasha provides for Faatimah and Safia, and other families like them, is only possible thanks to the generous support of the charity’s donors. Faatimah says, “Thank you, just thank you; supporting these children and allowing these nurses to do their jobs is just the biggest support. I’m just so grateful to have someone like Natasha.”