I have donated this Ebook to the IH research foundation, in order to raise much needed funds to continue their vital work. Please donate whatever you can, 100% of the proceeds are going to the IHRF. Every pound / dollar helps our IH community. Once you’ve donated you’ll be sent an email with the link to get your copy of the E book ‘Love is all you need.’
In 2003 my husband was diagnosed with IIH and overnight our entire world changed. I gave up work and became his carer, and our children became young carers. (They were very young, in fact, our youngest daughter Adele-Caitlin was only 2.) We muddled through though and worked together as a team. Our life was the ‘norm’ for her until she went to school. Then she realized that the other children were different from her, and she started being bullied because of her caring role.
She was too young to access any support, we couldn’t find any suitable books to help, so she asked me to write one. That was the beginning of my writing and my awareness work. The book ‘Caitlin’s Wish’ helped her so much that we were urged to publish it, which we did. It’s gone on to help countless children worldwide.
It’s ‘Caitlin’s Wish’ that someday all Young Carers will be treated with the respect, compassion, and understanding that they truly deserve – no matter where they live in the world. I made a promise that I would do my utmost best to make her wish a reality. I’m currently writing a series of educational books for schools called ‘Who cares for us?’ with the help of over 60 guest writers from all over the world, each contributing pieces that show life from their perspective. The books explain what it’s like to be a young carer, what it’s like to live with illness and disability and anti-bullying lessons too.
The story ‘Katie Boo’ is taken from one of the books in the ‘Who cares for us?’ series and is beautifully illustrated by Jeff Phillips. Adele-Caitlin and I, both felt that we needed to publish it in a book for young carers; especially young carers who have a family member with IH, and that’s how ‘Love is all we need’ started. (The Katie-boo story is based on my daughter’s story.)
The story ‘Idris the magical hippo’ was inspired by one of my dearest friends, as she tried to explain what I.H. was to her young children. She explained that there were silly, tiny elephants living in the CSF river in her brain, basically causing havoc. Within minutes I had the idea of Idris the Hippo (I.H.) and we decided it was imperative to include it in this book designed especially for children who have a family member with I.H.
‘Christmas Memories’ is a story based on the Caitlin’s wish characters but set in the future when Caitlin is grown up with children of her own. It looks at the way in which their family adapted their Christmas traditions to include Grandpa who was diagnosed with IH when Caitlin was young.
‘Love is all we need – Living with IH in the family’ started as a booklet I wrote a few years ago, in which I explained what IH was, and shared some of the lessons we’d learned as my children grew up in a family where their Dad had I.I.H. In it I share some of the tricks we used, to make life more fun despite their Dad’s diagnosis. I hope that by sharing these tips it’ll help somehow.
Life with IH is not easy and I hope this book will remind you that you’re not alone. The IH community is an amazing, caring online community made up of IH patients and their families, who are always ready to offer their support and wisdom.
Finally, I’ve included some pictures for children to colour in, they’re some of the fairy characters that’ll be in the new Caitlin’s wish stories coming soon, beautifully created by the illustrator Jeff Phillips.
I have donated this book to the IH research foundation, in order to raise much needed funds to continue their vital work. Please donate whatever you can, 100% of the proceeds are going to the IHRF. Every pound / dollar helps our IH community. Once you’ve donated you’ll be sent an email with the link to get your copy of the E book ‘Love is all you need.’
Thank you so much for your donation.