My story ........

For many years I have struggled with a rare illness called Aplastic Anemia it has certainyl had its challenges and is super rare. I didnt think i was quite special enough ...so just before Christmas 2023 I was given a second diagnosis of DC dyskeratosis congenita (super super rare). I have bone marrow failure and i am currently having treatment.

DC is such a rare disease that everyone I have spoken too has never heard of it. It's an ageing disease it means my cells age quicker than those who don't have DC and this is what has caused my bone marrow failure.

As its so rare the charity does not get much funding and this is why I have chosen to take part in a sponsored Silence along with my brilliant mum to raise funds for the charity.

I thank you in advance for been so kind. I have met some truly wonderful people over the last year. I have received overwhelming support.

I am really so grateful for TIME this is everything worth so much more than any material objects houses,cars, clothes etc. I spend my time now doing things worthwhile and making memories with those who matter the most.

I'm sharing with you a really personal journey one that is still ongoing so once again THANK YOU

Here's how DC Action will help people with the super rare disease ....

How DC Action are planning to help people affected by dyskeratosis congenita this year;

-Provide expert emotional well-being support, designed and delivered by qualified psychologists

-Help members of our community to access benefits and insurance

-Publish new up-to-date information resources to help people understand the condition, current research and treatment

-Facilitate improved opportunities for peer-to-peer support

-Raise awareness and help you to explain the condition to clinicians, teachers, employers, and the public.