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.

 

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