At 8 weeks old, Tilly who was diagnosed was given just two years to live after being diagnosed with a very rare genetic condition.
Her parents, Emily, 26, and Rob, 39, from Hertfordshire, received the devastating news just weeks after taking their newborn home that she had spinal muscular atrophy (SMA) - a serious genetic condition that means her muscles are extremely weak and don't function properly.
Tilly cannot walk, sit without support or swallow and the disease also affects her respiratory muscles, resulting in the use of a ventilator to help her breathing at night, HertsLive reports.
