Ciara has such a positive outlook – and I love how she’s become confident enough to explain why she looks how she does to strangers. The love and pride Eleanor has for Ciara is gorgeous (she reminds me of my Mum!). This line made me tear up – so beautiful: “Oh Mummy, don’t apologise, I wanted to be born. I love my life”
“Our beautiful daughter was born in June 2000. When she was born she was really red and her skin was really dry. As the months went by, our family doctor thought she had severe eczema and referred us to a dermatologist when she was 5 months old. He confirmed that she did in fact have eczema. We never seemed to be able to get on top of it and when Ciara was 4 years old, our family Doctor had had enough and contacted our dermatologist advising that something needed to be done, he finally referred us to a paediatrician dermatologist at our Children’s hospital, Dr Anne Halbert. On sight Anne diagnosed Ciara with CIE (congenital ichthyosiform erithroderma), my husband and I were stunned. We found out that we both carried a ‘defective’ (don’t like that word) gene which resulted in Ciara having ichthyosis. We were devastated, there was no cure, only management. We also found out that we had a one in four chance of having another child with the severest form of ichthyosis, Harlequin. Mind blowing! We decided not to have any more children and to concentrate on Ciara.
Since then, Ciara has been diagnosed with a chronic bone disease, scoliosis and short growth stature. Her whole life has been consumed with Doctors appointments, Specialists appointments and Hospital appointments. For over 2 years she has given herself 2 daily doses of injections and she decided last year – enough is enough. No more injections, no more immunosuppressants . Ciara made this decision herself. She had had enough.
We have brought Ciara up to face her ‘challenges’ and to deal with them head on – there is no such word as ‘can’t’ in our house – we always find a way to deal with things – even if it’s just to lie down, watch movies and have snuggles! That is the best medicine in the world.
It hasn’t been easy for Ciara and as she gets older we seem to be finding ‘other things’ but we deal with them.
I apologise to Ciara all the time, saying sorry for how Daddy & I made her, one day, she said to me “Oh Mummy, don’t apologise, I wanted to be born. I love my life” – what more could you ask for!
We try to be positive as much as we can, sometimes I get really angry when complete strangers speak you about your child’s ‘sunburn’ and offer all sorts of advice. Recently I had someone argue with me that my daughter had sunburn and not a skin condition. We soon sorted that one out.
Ciara is the most beautiful wee girl you could ever possibly meet. She endears herself to everyone – beautiful on the inside and out. She sees the good in everyone, very kind and considerate. Avid reader (always got her nose in a book) and has been writing books since she was about 11. She also has a beautiful voice and has even got her own album! We are SO proud of her! Reach for the starts! That’s our motto! And NEVER give up!
Carly asked me to write something a couple of years ago but I found it really hard – this was our daughter – perfect in our eyes and the most beautiful wee girl in the world. I found it really difficult to write about her ‘hardships’. This year I was late lodging this as I had to go think carefully about all the things I wanted to say. This is very emotional, for me.
Ciara is SO excited about The Meet – she has NEVER met anybody like her, even her dermatologist has never met anyone like her. She is unique in every possible way. The light of our lives and a blessing.”
“My name is Ciara and I am 14 years old…when I was four, I was diagnosed by my Dermatologist with Excema and Ichthyosis. I was in hospital for a week and when in there they taught my parents how to handle my skin conditions…then I went home, lucky for me my case of Ichthyosis isn’t as bad as some but it doesn’t stop it from being really sore sometimes…
Some people think that when you have a condition it means that you’re different but they’re wrong, you are simply special but some think being special is an invitation to be mean or to bully and trust me when I tell you that I’ve had my fair share of people, even older people who should know better, whisper behind my back not so discreetly and even if they do whisper. I always hear them…but last year, for the first time, a little girl asked her mum why I was so red and her mum said to her, “it doesn’t matter if she’s red, she is exactly the same as you and I, she still has arms and legs, fingers and toes and feelings”. And when I heard this women say this I turned around and smiled at her and asked her if she wanted me to explain and the look on her face. She was so shocked but she still managed to nod and so I knelt down in front of the little girl and explained to her about my conditions and when I was done I shook her cute little hand and she gave me the biggest smile and it made me so happy that at least some people have a warm heart and are able to teach their children that judging is bad.
We may be special but it doesn’t mean we are aren’t the same, we all have hobbies and friends, I have many friends and they never judge me and I have tons of hobbies like reading and writing, and singing! I love singing. And when people look at you as you read a story or sing a song and they are so shocked that someone so different can do something so amazing, thats when they realise that you aren’t different but simply special and then when they share a smile with you, it always makes me grin.
The challenges that I’ve faced through my short life only make me stronger and more willing to do more to make others smile and I will face many more hurdles through my life but when I face them head on I will always beat them and thats the most important thing…so never give up, always push on and you’ll find that when you face these hurdles it’ll draw peoples attention and those people will go on to be your friends and making friends is the best thing that will ever happen to you. I hope you can face your own hurdles and beat them and then smile on the other side, because thats all that matters.”
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.