My name is Henry.
I was born with a rare genetic skin condition called ichthyosis. It is a life long condition that means I have to have my skin treated multiple times a day. My skin feels very dry and itchy most of the time, I get scales that cover most of my body.
Ichthyosis is not like eczema or psoriasis. It affects all my skin, all of the time. It doesn't come and go and a "bit" of cream helps a little bit, but I need LOTS of cream, reapplied throughout the day, but even still it doesn't make it go away. It helps me feel more comfortable and less itchy.
I have alot of allergies and this means I have to be very careful about what I put on my skin and what I eat or even what I touch.
My Mum knew nothing about ichthyosis before I was born even though it's genetic. It often appears out of the blue and is difficult to understand for people.
But I'm a happy little boy and I'm a warrior.
The ichthyosis Support Group has helped my Mum by answering ALOT of questions and offering unwavering support when times have been really tough and that's why we are fundraising for them.
No one else gave us much information and the group is a valuable asset to help families come to terms with the condition and the level of care needed to support children just like me and their families.
May is my birthday month and it is also Ichthyosis Awareness Month. To celebrate my 1st birthday I'm raising funds and awareness of ichthyosis.
Our exciting activities to raise money include:
1. A sponsored walk around a local park.
2. Selling ribbon badges (50p) to help spread awareness.
3. A cake sale.
4. My sisters football team will be wearing blue armbands to help spread awareness.
5. My mummy set a challenge that we have to wear something red/blue everyday in May, my family are also taking part too.
Please give whatever you can.
Thank you! x Henry Alexander