Elsie’s CHI Story

Elsie was diagnosed with Beckwith Wiedemann syndrome whilst she was still in my tummy, it was mentioned briefly that she may have some initial low sugars, but this would resolve quickly.

Well after 8 weeks in our local NICU and a further 8 weeks at GOSH, it didn’t resolve and turned out she had another rare disease Hyperinsulinism.

She is nearly 5 now, still has a feeding tube, a feeding schedule day and night, a portacath, horrible injections and many blood sugar checks but she’s happy, healthy, and just gets on with it.

She started school this year and has been teaching her class and teachers about her conditions.  It was an anxious start for us but now she’s settled, and I feel she is in good hands.

The diagnosis was terrifying at first but now it is just life, and we are so proud of her and what’s she’s been through and continues to.