So my friend in the UK, Matt Jeffries has started a website for little Jack Oldacres who was born with Netherton’s Syndrome. You may recall I wrote about him a few months back.
The website is to raise money and to educate people about Netherton’s Syndrome.
Matt asked me to do a guest blog for the site, and here it is.
My aim of this guest blog was to provide some hope for the kids born with Netherton’s Syndrome and ichthyosis, and of course their families. I want people to know that things are going to be hard at any point in a life with this skin condition, but things are not futile. There are so many opportunities for the taking, and you really just need to enjoy life.
You can read my guest blog here.
Thanks for asking me to write for the Netherton’s Syndrome page, Matt and the Oldacres family.
I think you set just the right tone with your piece – you gave a bit of hope whilst still being realistic. It's a great site and I hope it manages to meet its aim of raising awareness of Netherton's Syndrome.
You're super chic in that photo. You take the sunshine in life and dowse the rain. I like your outlook on everything. Thank you for providing hope for those who need it most 🙂 x
well done. I would like to come to Melb for yr opening-when is it? it depends on my work though, and I do have some travel plans. Let me know x
You are an inspiration!!! x
A very inspirational post, both for those who have Netherton's Syndrome and those who are learning more about it. Right on, Carly!