Everyone has a story, here's mine...
I'm blessed with three beautiful daughters, Kayleigh (12), Kaitlyn (10) and Kiara (7).
My middle daughter Kaitlyn was diagnosed April 2009 with Linear Scleroderma En Coup de Sabre and Parry Romberg Syndrome, when she was 5 years old. What!? Was my first reaction, it came as a huge shock, when a dermatologist diagnosed her. The thought of our little princess losing her face was unreal!!
It started when she was two years old. I noticed a blue line running down her forehead and everyone always said it's my imagination. Kaitlyn has been in and out of hospital from 5 months of age, always with high fever and a nasty chest.
She went for her first CT scan and MRI in May 2009, reporting Vasculitis and once again confirming Linear Scleroderma.
It was quite difficult finding the right doctor, in the beginning of the illness. It was a long journey for us from the one doctor to the other, with the same explanation: The illness is very rare in South Africa. We even had a battle with our Health Care Fund (Discovery Medical Aid), refusing to pay for her medication, cause her illness was not listed. I discovered a wonderful Scleroderma group on Facebook, it became my support. (I searched day and night on the web, wanting a cure so badly!!)
She is currently seeing a team of doctors (Pead Rhumatologist) at the Redcross Childrens Memorial Hospital.
I have learned a lot since and one thing that I can share with a newly diagnosed family is to focus all your energy and love on your child and not the illness. Embrace every day. As a mommy, my job is to encourage Kaitlyn to be brave and strong I won't always be there to protect her…
The illness effects the whole family and sometimes in an unexpected silent way… One afternoon, I opened up a can of worms… Kayleigh, started rebelling, acting out, just being difficult. Warning lights came on. She is always very well behaved! We had a heart to heart chat and she said: Mommy I love Kaitlyn so much and I don't like it, when people always ask, what's wrong with Kaitlyn's face. I didn't realise the effect the condition caused in our family until that moment.
As for Kaitlyn, I have encouraged her to be positive and to find something good in every bad situation and to be a fighter and not a victim of the illness. We take every day as it comes… It's not always easy, but she is a little girl with a huge heart and very courageous! She always smiles and loves to dance, like there's no tomorrow. Dancing is her biggest passion. It's her way of expressing her feelings.
She has recently been asked to become an Ambassador for HCSMSA (Health Care Social Media South Africa) I'm a very proud Mommy!!
PS. Remember to Hope, Dream and Love