Last year I had lunch with a wonderful family - Tania and Edwin, and their two little girls Litia and Zadie. Litia and Zadie were funny, artistic and really good conversationalists. They were cute and giggly. As I wrote last year, They guessed my age at 90 and 20, and then asking "how come you are 31 Carly, Why?!", quickly adding that I was born "many many many years ago"!
Litia told me she wants to be a school teacher, a swimming teacher and hairdresser but doesn't know what days she will do those jobs on, and Zadie said she wants to be a princess and the The Tooth Fairy!
It was a lovely lunch - gosh this condition has afforded me the opportunity of meeting great people!
Tania sent me this beautiful story to publish this week. The girls have Congenital Ichthyosis form Erythroderma (CIE). Tania states that she's not known any different because she's had to apply creams since day one of Litia's life. I love how she's described their personalities - they really did have a great impact on me when I met them. And Tania is a great mum - compassionate and encouraging and so caring.
Meet Tania, Litia and Zadie.
"I am a lucky mum. I have two beautiful daughters who mean the world to me. My older daughter, Litia is the cautious observer. She likes to take a good look at things before she tries; she can be reserved on first meetings but once she feels comfortable, she may not stop talking. Zadie, my younger daughter is bold, bright and very melodramatic. She does not stop talking, even when she is sitting on the toilet. Both my daughters have ichthyosis.
When Litia was born via c-section (she was breech), maybe I was too drugged up or high on the changes in hormones that occurs when you have a baby, but when the specialist diagnosed her as a collodion baby, I didn't care. As soon as I saw her, I fell in love with her, and whatever came with her, was it. So, creaming her all over her body at each nappy change became the norm. And carrying a tub of Dermeze around in the nappy bag, was also normal. And in those heady days where you have a newborn, so much is new that I have never really known anything different.
The funny thing was that when Zadie was born, the attending paediatric specialist quite excitedly said, 'she looks fine 'or something to that effect, but my husband took one look and said, 'no, she is looks exactly like Litia did' which she was. But that was it. In the end, we are what we are.
It has only been over the succeeding years that sometimes I realise that we need to do things slightly differently, because of their ichthyosis. I mean, aside of their susceptibility to overheating or sensitivity to cold. Growing up, I went to the beach a lot and loved it. But with our girls, particularly Litia, we last maybe an hour, before she starts getting uncomfortable, her feet sting because of the dry skin and cracks. They have actually swum in the sea two times in their lives so far, but both times ended with hasty exits, some screaming and quick showers. We mainly do other things like going to the zoos, shopping, cafés and play parks. They love swimming in swimming pools and that is fine for their skin.
Litia started school last year. And whilst she is one of the youngest and does have her skin to contend with, she is now doing well. She is a beautiful, sensitive and confident six year old girl and I am so proud of her.
Zadie will start school next year. She is my social and fashion butterfly; very bold and confident. I have less worries about her going to school.
I don't know what the future holds for them; I have had the occasional insensitive strangers come up and tell me what I should do or assume they have a form of eczema. Litia has had some comments or adverse behaviour about her skin at school, but so far so good. I can only hope and pray that my husband and I can help them become confident, secure individuals. Whatever will be will be; but I know I am a lucky mum."
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.