06 May 2013

Ichthyosis Awareness Month: My Mum's story.

My Mum is the best. She's been my carer, my guide and my best friend. And I am continually thankful to her and Dad for for giving me such a wonderful life and never stopping me from doing anything. I can't imagine what it would have been like for her to have her life changed so dramatically after I was born. So I asked her about it.

"Roger (Carly’s dad) and I emigrated from South Africa and moved to Sydney in January 1981. My pregnancy with Carly was very normal with no morning sickness nausea etc . We moved to Albury in September 1981 and I had the normal check-ups with the gynaecologist and everything was normal. I had check-up five days before Carly was born and was then told she was upside down but because she had three weeks till she was due to arrive there would still be time for her to turn. Well she decided to arrive three weeks early and was still upside down when she was delivered. She was red all over and a dermatologist was immediately called. He diagnosed the redness as Ichthyosis Erythroderma. He also told us that by the time she left hospital (after 10 days) it would clear with creams and ointments he prescribed. This did not happen at all, in fact she got worse.

We were frantic with worry about Carly, and having no family or friends in Australia, it was hard to comprehend what was happening. The paediatrician was great, although our visit to him almost every second day was a nightmare as every time we came away there was some different wrong with Carly besides her skin problem

At three weeks Carly was admitted to The Royal Children’s Hospital in Melbourne to where she stayed for 3 months in the intensive care unit. The day she was supposed to be discharged she had a seizure so she stayed for another month. The cause of the seizure was unknown. By the time she was discharged she was half her birth weight and the doctors did not have much hope for her survival.

We went home (4 hour drive) with a sunken feeling, but decided to make the most of the time we had with her and we are still making the most of our time with her now.

Life was very slow. Each day was a bonus although we did think about how to cope in the future.

Carly had lots and lots of visits and stays at the Royal Children’s Hospital and lots of stays in our local hospital (Albury Base Hospital). The medical staff and doctors at both RCH and Albury Base were fantastic and still is now with Carly attending the Royal Melbourne Hospital.

My biggest concern was how Carly would cope growing up in a small town. We moved to a place called Walla Walla north of Albury. I took Carly to the local preschool where she had a great time, but kids were wary of her even at the age of 3 years. I worried about how she would cope in primary and high school. I did make some great friends though. They supported us and was always there when I felt down or I needed them to babysit which was not very often as I felt guilty leaving Carly.

I went back to partime work which suited our situation. The day I started work Roger rang me and said Carly had to go to hospital as she had a fly in her ear. She had to have an operation to remove it. My employer was great. I was told to have as much time as I needed.

Primary school was very average although the staff was supportive. Carly did not have close friends and I always told her high school would be better. High school was a bit better. The first three years was hard and Carly tried very hard to fit in. I use to get very angry at people staring and making snide remarks. As Carly grew older she told me to ignore them as she can cope and handle people her way without getting angry. I found people very ignorant and I still do.

Carly applied for an after school job which was at a department store. Another worry, how was she going to cope with the customers especially young kinds, teenagers or rude/ignorant people, but she took it in her stride.

Carly completed her HSC and then went on to further her studies at university - doing a bachelors and then a masters degree.

I then worried about her going out into the big wide world, but she showed us that she was confident and matured enough to move. The first year of her moving 300 km away from home (to Melbourne) was a worry, but I don’t have to worry too much about how she will cope."


A number of parents of children with Ichthyosis have told me about their guilt of birthing a chronically ill, visible different child. They're also worrying that life will continue to be difficult for them and their children. I asked Mum to write about her experiences and advice for new parents.

"As parents, life was a challenge. We did a lot of questioning as to why and how Carly could have been born with Ichthyosis. Our guilt was a natural feeling.

Our main aim was to get Carly home from hospital and get into a routine. Once home we decided to make the most of Carly as we were told she would not survive. The medical team we had was very supportive. My advice is:

- Speak to your doctor, ask questions , no matter how trivial.

- Take time out for yourself. There will always be someone to offer to babysit.

- Join a mother's group. Interact with children and parents.

- Don't be afraid to go out, people will stare, children will ask questions. Answer them politely. Ignore rude people.

- Feel good about yourself. If you are depressed it will rub off.

- When help is offered, take it as a fifteen minute break means sanity.

- Take things one day at a time. When Carly was a baby, I worried about how she'd go at school. Her paediatrician encouraged us just to focus on the present day and to cherish every moment spent with Carly. You can't change the future by worrying about it."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.



  1. Hi Carly's Mum,

    It's so clear how much your family love each other. I don't need to tell you that you've raised a remarkable you g woman and I know you must be proud. I've no doubt that having such great parents has helped her be who she is. I think anyone with a "difference" can relate to your post. It must have been difficult to see your baby so unwell in hospital. Thank you so much for sharing your insights.


    1. Hey Cat, what a lovely message - thank you /) Mum's the best and my attitude can be credited to her and Dad.

  2. Wonderful! I love understanding people's stories and no-one knows anyone better than a mum. Loved seeing her pride in you Carly.
    So much to learn from this post, I particularly liked the hint near the end:
    " Feel good about yourself. If you are depressed it will rub off."
    So true, regardless of your situation.

  3. An insightful & well written article Jeanette...in Carly, you & Roger have a wonderful role model for younger & older people alike, including those with & without disabilities. Carly, you are an inspiration to those around you...keep up the great work you do :)

  4. This is great, thanks for all the stories this month, I love getting to read about real people and their experiences. I love the young photos of your mum, I can definitely see her in you. :)

    1. Thanks Roni - we both like wine and food and can never stop talking or laughing :)
      I'm glad you are enjoying the posts! I'm loving bringing them to you all :)

  5. What a great mum!
    Carly and Mrs. Findlay, you are a credit to each other.
    Big hugs.

  6. OK, now you HAVE to come to Upstate South Carolina, Carly, and bring Mum w/ you. I love her. You are a miracle of her love and devotion. Please give her a hug from me.

  7. a beautiful and inspirational story. a new mother myself it reinforces how each day is precious and to be cherished.lots of love to you all!

  8. Hello,

    I LOVE THIS POST!!!! I've been lucky enough to meet C in real life and get to know her and I am always impressed and humbled by her great attitude and confidence.

    Being a parent is a challenge and I think even more so when you have an ill child who suffers with chronic health issues.

    I am so impressed with the strength and love you have shown C.

    This is just a lovely post, thank you so much for sharing your journey with us all. xxxxxx

  9. Your story shows that there is much that is universal to all mother/daughter relationships. Thank you for a glimpse of what you as a family have gone through, and for including those adorable pictures. Now thanks to your nurturing love and calm but fierce determination, Carly's work has touched people all over the world. {{{Hugs to you both.}}}

  10. I love your Mom!!!! And this post is great! AND very helpful! :-)

  11. A lovely account from Carly's mum. You have obviously done a great job and raised a remarkable daughter. I'm so glad those early doctors were wrong about your baby not surviving. The world is a better place for people like the two of you.

  12. Your mum sounds awesome. As a mum myself, the part that stood out the most was where she said she no longer had to worry too much about you. To raise a confident child that can take care of them self is actually a huge thing. Your mum clearly did a good job as you are amazing. I bet she is so proud of what you have accomplished, I know I would be.

  13. I've been fortunate to meet both Jeanette and Carly and it is obvious that a Mothers love can conquer all. Whilst our daughter has a similar condition, over the years and as she's grown it is less and less obvious. I believe children with obvious physical difference develop a high level of empathy and compassion. Carly is a beautiful, intelligent resilient woman who exudes confidence. Her mom is a warm loving person with a kind and caring heart. Apples don't fall far from the tree. Carly I hope you go into politics as you make such a difference in people's lives, you have a gift of writing and I would love for you to have a platform to make real change in the disability sector. I believe in you and from one mom to another Jeanette be proud, be oh so very proud of your wonderful daughter

  14. Oh Jeanette, this is lovely. Nowadays Carly has a pretty similar life to me day-to-day and it's hard to remember sometimes the challenges she was fighting off from the very beginning. I'm pretty sure she got so far because she had such great parents. Congratulations and thank you for bringing her safely into adulthood so we all got to know her.

  15. Such a beautiful post - your mum did a magnificent job!

  16. What a beautiful insight into a parents perspective on your incredible life.. I read this while feeding our new baby in the early hours of this morning and it made me so emotional to imagine what it was like for you Jeanette. No wonder Carly is such an inspiration with all the love and support you and Roger have to give. Loved the photos too. Carly I am not sure I have ever seen pictures of you as a baby and a kid. What a cutie! X

  17. What a beautiful insight into a parents perspective on your incredible life. I read this while feeding our new baby in the wee hours of the morning and it made me so emotional to imagine what it must have been like to have such a sick child. No wonder Carly is such an inspiration - with such wonderful parents as you, Jeanette, and of course, Roger. I loved the photos too. Carly I dont think I have ever seen any photos of you as a kid. What a cutie! X

  18. What an incredibly heartwarming, beautiful story. The strength and courage of your mother is so clear in her words. Her fears resonate so strongly and that you overcame these together, moved forward, and have so much to stand up and be proud of together is testament to what love can really do in our world. Thank you for sharing Carly's mum xx

  19. What an incredibly heartwarming, beautiful story. The strength and courage of your mother is so clear in her words. Her fears resonate so strongly and that you overcame these together, moved forward, and have so much to stand up and be proud of together is testament to what love can really do in our world. Thank you for sharing Carly's mum xx

  20. blogger chewed up my first comment - so here I go again.... What a beautiful heart warming story. Really shows the power of love conquering fear, society and the negativity of others. What an incredible journey you two are on together! Thank you for sharing Carly's Mum - such an empowering story to share xx

  21. Just getting to read this now. Your mum wrote so well, what a strong and supportive and lovely family unit you are. You know how to cherish life & live it well. Homemade sausages included :) Lots of love.
    Heidi xo

  22. I am fairly sure I love your mum - the love that she has for you and her pearls of wisdom shine so much. Thank you.

  23. The love between mother and daughter is so evident in these photos. The one where you're both baking with the rolling pin is probably the cutest photo I've ever seen in my life!
    Wise mamma. x

  24. Since the day my daughter Sarah was born with Netherton Syndrome, I haven't got the courage to read more about it or join social media group to know more about it. Guess I have been in complete denial over the reality. Thank you for sharing as it makes me realize this is not the end of the world and there'll be always good things coming out of a bad situation.


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