Natasha has Kniest syndrome, one of the rarest forms of dwarfism – only 100 people in the world have this form and Natasha has never met someone with the same condition. Those affected have a short trunk, arms and legs, hearing and vision problems, and severe mobility problems.
Diagnosed shortly after birth, Natasha is now 12 but is the height of an average 4 year old. Her hips and ankles are now too unstable for her to walk and she will need a double hip replacement when she has stopped growing. She uses a power wheelchair at school, and can fall very easily when she is out of her wheelchair. Kniest syndrome also causes curvature of the spine which can compress the heart and lungs; Natasha has had three operations to improve the curvature and prevent deterioration. She has to sleep with a ventilator every night.
Despite her struggles, Natasha’s mum Grace says; ‘Natasha is a very well-adjusted and happy girl. She is in mainstream school and is a high academic achiever. She loves science. Stephen Hawking is her role model. She wants to be a physicist when she grows up. She’s a fantastic little girl.’
This year the monies you’ve raised by taking part in Jeans for Genes Day will fund a residential weekend for the charity Little People UK. The weekend will bring together children with growth disorders, like Natasha, to enjoy different activities including a high ropes course, bouldering and buggy riding.