02 September 2013

Experience relayed from patient to parent.

A couple of weeks ago I met baby Matilda and her mum Cheryle at the Royal Children's Hospital. Cheryle and I have become friends very recently - Matilda is a newborn baby with Ichthyosis. Cheryle has been reading my blog for a while, after a search for Ichthyosis support groups. She's connected with a lot of other mothers of children with Ichthyosis world-wide, too.

When I met Matilda and Cheryle, Matilda was nine weeks old. She's not yet been diagnosed with a specific variation of Ichthyosis, and she was in hospital for an infection. They were far from their family, and Matilda is too little to articulate how she is feeling. I knew that this transition to life with Ichthyosis would have been overwhelming for Cheryle. So I offered to stop by the ward for to give them some company.

I was there for an hour, and we talked a lot. A little about Ichthyosis, a lot about life as a whole. Cheryle went to warm Matilda's bottle, unexpectedly putting Matilda into my arms. She was crying to start with, but after a few minutes and walking around, she became settled, snuggling into my chest. (I told Cheryle that was hoping that she wouldn't spew up on my shoulder as I had a brunch date immediately afterward, hah! Lucky Matilda didn't!) It was lovely. I looked at Matilda with so much hope and wonder, knowing she's going to change the world.

Matilda is so precious - a tiny little girl (she's having trouble putting on weight - failure to thrive is a trait of Ichthyosis), with fragile skin on her face and body. I wondered how much it hurt when I touched her. I was very gentle.

I've not met many parents of children with Ichthyosis in person - only Julie and Danny, parents of Jack, but I have met quite a few online. I hope to show them a positive example of an adult living with the condition, give them some hope for their child. But I am always mindful that (like me) they're taking things one day at a time, and they are not sure what to expect with such a rare and severe condition that's probably unexpected. I hope not to be unrealistically positive, especially when it's likely they're experiencing a sense of grief and fear of the unknown future. I always say "life will be hard but it will be ok", and I firmly believe that. It has been that way for me.

My awesome new friend Jax, (who writes amd reads beautiful poetry about disability) has started to connect with children with Cerebral Palsy, and their parents. She said this recently:

"I am saying to the parents, I dont have all the answers, but I have passion and am willing to explore things with you and that know that for me disability provides the chance to live an interesting life, to meet different and intriguing people, to see the world and people from a different perspective and to be in a body which is very much unique."

I feel exactly the same way when I write about life with Ichthyosis, and especially when I engage with new parents. Thanks Jax for writing what I feel.

Jax, Cheryle and Matilda have given me some inspiration (and confidence) to offer my services as a contact for parents of children with Ichthyosis, and perhaps other young people. This week I am visiting my former dermatology nurse at the RCH, and talking to the group of dermatology nurses there, as well as being a contact for parents.

Cheryle wrote about my visit:

"You have been an amazing support for us, and showed me despite how scary and frightening this is right now she is going to be an amazing young woman with a bright future despite her visible difference. If you can share that with only a 1/4 of the parents you meet it's an amazing thing."

I think it's really important for parents to have some support from adult patients with rare conditions - we've experienced a life of both challenges and celebrations, and often know as much as doctors and nurses specialising in treatment of our conditions.

Like Jax, I don't have all the answers. I can't tell you what creams will cure your child or even how to handle bullies.

But I can tell you how the condition makes me feel - how my eyes get stringy and that sometimes a good sleep in a warm bed is just what I need to calm my skin when it's sore, and that I love waking up each day knowing something good is going to happen. I can tell you that instilling a sense of self-worth and self-belief, resilience and the courage to dream in your child is as important as all the medical treatments you all go through. And I can tell you that life with a visible difference can be a blessing.

Matilda is a beautiful girl and I hope that when she's old enough, she'll pick up the phone to have a chat. We can chat about Ichthyosis and we can chat about lots of other things. I wonder what my life would have been like if I'd had an adult role model with Ichthyosis when I was a child?

If you'd like to get in contact with me to ask me about life with Ichthyosis, you can send me a message on Facebook or via email.




  1. you are a good role model and that is one cute baby xxx

  2. Amazing, Carly!
    Look at all you've become and you *didn't* have an adult with Ichthyosis as a role model while you were growing up...the people with Ichthyosis and their families you're reaching out to are SO LUCKY to have you. x

  3. Love this!! And if you don't mind me saying, you look so comfy with that bub ;-)

    1. Hehe my maternal instincts surprised me! And thanks!!

  4. Do not worry dear. Every thing will be fine. Because god takes sometime but do every thing fine. God bless you and your sweet little baby.

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  5. Carly, once again a simple post is just amazing, I love that last pic with Matilda looking at you, just beautiful. Every single word you speak as a strong, resilient woman tells parents that their child's disability does not have to be their definition. It is something they will live with but they are and will be so much more than a big scary word on a doctors page. xxx

  6. Thank you Lisa - she was looking at the TV I think! But I would like to think she is looking at me ;) And do think patients' experiences can be just as powerful and important as medical journals. Thank you xx

  7. How generous of you to share your experiences with ichthyosis with others, especially parents who only want their little ones to feel better. You've given those parents hope!

  8. I agree with you on so many levels Carly, patients experiences are invaluable and far more real than any doctor or journal could be. We have a 6-year old with high health needs and I've actively sought out others in similar situations simply because they 'get it'. Thank you for sharing your story.
    Visiting via DP Blog Carnival :)

  9. Lovely pictures, and what a lucky girl having you as a role model. And both of them having you to turn to! There's only so much information the 'experts' can share.

  10. That is a gorgeous connection to make, Carly.

    Who did your mother get to turn to when you were a child? How did she navigate?

    One of the true blessings of this interconnected world these days is what you can offer to these families - awesome.

    1. Thanks Jeanie
      My mum wrote her story here in May - search the archives :)

  11. Thanks so much for sharing your experiences - I have never heard of the condition before, and it is ignorance that can cause so much pain out there. I am so admiring of your support for others - good on you! Saying hi from Digital Carnival.

  12. Ah, a beautiful little girl, so full of promise. You are doing such good, Carly. As a parent of a recently diagnosed ASD little boy (he is almost 3), it has been so important for me to meet other parents, read the blogs of adults with autism, and recently, to meet an adult with Aspergers.
    Your lifetime of experience is like gold to these parents, and a great salve, along with that simple and true mantra of what it will be like, and of course, the example of you yourself presents their greatest hope for their children, happy and whole and lovely.


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