ALBERTS BIG PUNCH

Hi, I'm Amelia mum of 2 beautiful boys. In 2016 my youngest Albert was born. Albert was born a healthy lively beautiful 9lb baby but after failing his newborn hearing check I knew we was heading on a different journey to what I expected. We was told Albert has a moderate/severe hearing loss and was fitted with his hearing aids at 7 weeks old. Over the years Albert has become the most beautiful, inquisitive, confident little boy. Thanks to his hearing aids Albert has come so far with his speech and learning.

In 2021 our journey became even more unique when we were given a diagnosis that has changed our lives forever. After noticing Albert experiencing some light sensitivity I urged the hospital to do some extra testing on Albert's bloods, after 6 months I got a phone call to tell me Albert has Ushers Sydrome. Ushers syndrome is the biggest cause of combined deaf and blindness. It has taken me a year to process and come to terms with but It is now my mission to do everything I can to spread the word and make Ushers more known.

Being such a rare condition makes funding more difficult. Many trials are ready to go and underway but sadly the government are not putting in the correct level of funding for these to continue and go ahead.

There is currently no cure for Usher syndrome, but there is a growing community. Building a community leads to treatments and a cure. Therefore this summer I will be organising a 24 hour punchbag event (details to follow) to raise as much money for my chosen charity CUREusher.

I hope you can support us through our journey ❤

Amelia

xxx