Eva-Hope’s NF2 story

On 30th June 2022, we welcomed our first daughter into the world, Eva-Hope.

At first, everything was great and then we welcomed our second daughter in October 2023.

Prior to receiving this diagnosis; we received news that my younger daughter Eleanor-Grace did not have the gene and therefore did not have NF2, which gave us hope that our Eva-Hope didn’t too. Then the news was given to us. At the young age of just 21.5 months, she had NF2.

This came to us as a scare rather than a shock as my husband wasn’t diagnosed until 16 years old. The scariest part of it all, is no one can tell me how serious her condition will be, and she cannot be scanned until she’s older, to see where the tumours lie.

Her dad, Harry, only has a mild case of NF2 whereas her Grandma, Kirsty, had a more severe case and passed away at the age of just 36 years old. This news was devastating to us when we found out about Eva-Hope, to a point where Harry blamed himself for her diagnosis, whereas we knew from the beginning there was a possibility that our future children would have the condition.

We know there is a long way ahead to understand the full impact of Eva Hope's diagnosis,  we have recently found she has a congenital hamartoma of the retinal pigment epithelium, affecting her sight in the left eye. 

Despite this, Eva-Hope is such a happy, clever girl who takes everything in her stride. And now we have this diagnosis, we are glad we have it early so we can learn about it alongside Eva-Hope.