23 May 2014

Ichthyosis Awareness Month: Maddy and a book giveaway.


A wonderful writer and illustrator contacted me telling me about her book Maddy and Ma. Barbara Jarvis has written a book to support the dermatology department of the Princess Margaret Hospital for Children in Perth Australia. Barbara's grandchildren, Maddy (7) and Toby (5) have the erythrokeratoderma variabilis form of Ichthyosis - they're regular patients at this hospital.

I loved the story and the beautiful illustrations in Maddy and Ma. The bond between Barbara and Maddy is lovely. There's a chapter in the book called Maddy and the pink dolphin - it's about celebrating uniqueness.

The book is probably suited to children under 10.

Barbara sent me two copies of her book - one for me and one to give away. Leave a comment with what has been your favourite thing about Ichthyosis Awareness Month by 1 June. Barbara will choose the winner.

Read more about Maddy and Me in an interview with Barbara.

Carly: Why did you write this book? How long did it take you?

Barbara: "My two passions are writing and watercolour painting and I was looking for a new challenge. Maddy and Toby, my two grandchildren, were born with a rare skin condition and are under the care of the dedicated doctors in the Dermatology Department of the Princess Margaret Hospital for Children in Perth. I decided to produce an illustrated children’s book and donate all proceeds from sales to the Hospital.

It took me three years to realise my dream but I finally got there! I have a lot going on in my life but ‘escaped’ into my own little world with my laptop and paintbrushes whenever I could."

What skin condition do Maddy and Toby have?

"The doctors have been trying to characterize Maddy and Toby’s rare genetic skin condition with skin biopsies and gene studies and, at this stage, feel that have a form of erythrokeratoderma variabilis, which is in the ichthyosis family of skin diseases."

Has the book empowered Maddy?

"Maddy loves the fact that she is now “famous”. She enjoyed giving a copy of “Maddy & Ma” to her doctor in the Dermatology Department at the Hospital. She gave a copy to her teacher and was so proud when the teacher read a couple of stories to the whole class."

Do you see the book being a resource to teach children about visible differences?

"My main focus in writing “Maddy & Ma” was to highlight the special bond between grandparents and their grandchildren. The twelve stories came about from spending precious time with my grandchildren. Some focus on social issues and simple moral dilemmas faced by young people, some delve into the world of make-believe that children love and another encourages young people to give technology a break and enjoy simple outdoor pleasures.

One story deals with accepting visible differences in ourselves and others and I’d love to think that it carried a positive message to us all."

Maddy’s skin condition features only very briefly.I love how you’ve shown that Maddy lives such a full life and has a great sense of intelligence even with her skin condition. Thank you for showing this. How important do you think it is to show a wider life lived when someone has a visible difference?

"Maddy and Toby have learnt there are certain things they can’t do because of their skin condition but their family have always focussed on what they can do rather than what they can’t do. I think it’s so important that we instil in our children a sense of self-worth and a positive approach to life, whatever their situation."

The analogy of the pink dolphin is beautiful. Is that how you explained Maddy’s skin condition to her?

"Maddy and Toby have grown up used to regular visits to the “skin doctors” and daily “creaming” to ease their skin’s dryness and itchiness because they “have a skin condition”. I once saw a TV documentary on dolphins and learnt about the rare pink dolphin. It struck me that Maddy is like that rare and very special pink dolphin. She loved the analogy."

What are Maddy and Toby’s goals in life? What do they want to be when they grow up?

"Maddy wants to be a tennis player like Nana and an author and illustrator like Ma. She “writes” a book a day. Toby wants to be a racing car driver like Daddy."

How has this book benefitted the Princess Margaret Hospital – is it an education resource too?

"All proceeds from sales of “Maddy & Ma” go to the Dermatology Department at the Hospital towards research into and treatment of rare skin conditions in children.

It’s early days in the book’s release but I would like to look at the possibility of introducing it into primary schools."

Tell me about why you think the relationship between grandparent and grandchild is so important?

"Social interaction between the young and the old can be magic. The relationship between grandparent and grandchild in particular can bring so much happiness to both parties. They can learn from each other how to enjoy life. Grandparents can provide mentorship, emotional support, humour and wisdom. Grandchildren give their oldest relatives unconditional love, fun times and spirit-lifting hugs!"

Where can we buy “Maddy & Ma”?

"It can be ordered on-line via the Princess Margaret Hospital Foundation’s website. The cost of the book is $20 plus a small charge for p&h. The Foundation is happy to arrange sale and delivery anywhere in Australia, or overseas. For those living in Perth, the book can be purchased at the gift shop/kiosk at the Princess Margaret Hospital.

All proceeds go to the Dermatology Department at Princess Margaret Hospital.

Barbara Jarvis doesn’t have a website. Enquiries can be emailed to her at dickj@tpg.com.au or to Maddy and Toby’s mother, Tracy at tracy@abmarine.com.au"

Don't forget to leave a comment to enter the competition to win a copy of Maddy and Ma! Entries close 5.00 pm AET Sunday 1 June 2014.

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.




  1. Hi Carly,
    I tried to purchase a copy of the book and I can't seem to get to the end of checkout. I then tried the emails and that didn't work either. I was directed to other websites.
    Am I doing something wrong???

  2. My favorite thing about IAM is sharing our little princesses with anyone who will take the time to know them. You afforded that, Carly, when you invited me to make a guest post. Our little darlings are so delightful, I just want them to be known for their funny, quirky, jubilant spirits. And I feel such a kindred to Barbara whose grandchildren have EKV just like A & JE. There is absolutely NOTHING like being Grandmawmie. It fills up a part of me that I didn't know was there until I became a grandparent and realized there had been this dormant, never realized wonder that makes me smile. It could possibly be compared to getting to know someone w/ a visible difference and finding that someone fills an otherwise empty place that you didn't even know was a wasteland inside you.

  3. The best thing about Ichthyosis Awareness Month for me has been seeing the wonderful support for others with Ichthyosis within the community & the push to really educate those of us with little or no knowledge of this condition. Keep up the great work :)

  4. My favourite thing about IAM is the openness I feel towards strangers who stare or ask questions out in public - I feel more inclined to engage in conversation and give them one of our information cards during May when I keep in mind that the more education about ichthyosis, the better.

  5. The best part of IAM is meeting new families and building this wonderful community. Knowing that we are not alone has helped me tremendously as a mother of a 4 year old with lamellar. I do not know what I would do without the love and support from this community!

  6. My favourite thing about IAM has been being able to introduce my two young children to the individuals and families who contributed their story to the blog. Educating and informing my children is bringing out their compassion, empathy and understanding. They get excited about peoples achievements and feel saddened by negative experiences people endured.

  7. I have not heard of IAM until now. This book is such a great cause!

  8. Oooohh, I'd love to win a copy! My favorite thing about IAM is educating about ichthyosis in new and innovative ways, and sharing our stories so that others come to care about and learn about ichthyosis.

  9. My daughter loves dolphins and would love this book, it would be good for her as she has psorasis, anything to help!


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