Sami writes of two generations of Ichthyosis in her family – her Dad and her son Mason. They both have X-Linked Ichthyosis.
Reading her story of the stigma – perhaps self imposed – that her dad felt makes me so sad. There is often great shame in looking different, and also around leaving skin everywhere. I know I constantly brush myself off surfaces I’ve touched. I hope that her Dad finally found peace with his Ichthyosis.
While at first Sami ignored Mason’s diagnosis, she’s come to embrace it. This is a heartwarming story and I hope that it installs confidence in others who are afraid to embrace their skin condition.
Her family will do colour run to raise money for the UK Ichthyosis Support Group – you can donate here.
Doing the colour run was initiated by Mason’s big brothers to celebrate his difference. So beautiful. You can follow the Facebook page here.
Meet Sami and Mason.
Life for me was a bit different then many other people, My dad you see was a human crocodile! Yes you got it right I grew up with a dad who had the actual skin of a living breathing crocodile. My dad shed like a snake and hid away in his den in our basement. He was very embarrassed by his skin condition you see, he covered himself head to toe even on the hottest of days, he grew a bushy beard and if ever asked why he shed all over the place or why his skin looked different we were scolded and told not to let him hear for he was half crocodile and would eat us up if he ever did hear.
As you can guess we never did speak about his condition, grew up as embarrassed as he was, friends never came around and if they did it were excuse after excuse of why the dead skin was all over the floor, or whymy dad looked the way he did. But still never did I ask of learn for fear my dad might actually be half crocodile.
I became pregnant and had 2 amazing healthy beautiful boys they were perfect and my husband and I decided we wanted 1 more perfect little being to complete our family. Mason was born December 18 2008 and he was this healthy bouncing beautiful boy, but wait something wasn’t right! Mason had really really dry skin. I was told by doctors as he was early it was just a bit of dry skin, I knew right away he too was half Crocodile! I looked for answers, for further information on this secret condition my dad had and learnt about X-linked Ichthyosis. I brought Mason to a dermatologist in Germany and he simply looked at my son and said Yes he has it.
For years we ignored this diagnosis, I will admit I was embarrassed, devastated and horrified. I seen the pain my dad suffered and I did not want that pain to be with my son. People are cruel and only seem to be getting worse in this big bad world. I cried, I scrubbed and I searched for answers to some how have a cure but as all who have or know about Ichthyosis there is none. I again ignored the diagnosis almost wishing it wasn’t there. Mason has been blessed and is not affected bad so this was an easy thing to do.
Mason is 5 now and the kid has more confidence and love then any other kid I know, he loves talking to people and if you ask him he will name you all his 5 girl friends all of which he is having a hard time choosing which he is going to buy a house for and which he is going to marry (hard times for a 5 year old). Mason loves sports and takes part in an after school sports club, one day my older two boys (Ethan 8 and Caleb 7) came with me to collect him. after collecting Mason the boys played in the park. Caleb came over a bit upset, I asked what was wrong and he told me 2 moms were talking about Mason, they were talking about his funny skin and Caleb did not like it. On the way home we all spoke of what happened, I told the boys sometimes people who don’t understand make comments and observations that are uneducated and nasty. The boys agreed it wasn’t right to be mean to people who were different and tried to understand as much as they could why someone would make comments about their brother.
A few days passed and the boys were watching telly, a commercial talking about a marathon came on and Ethan asked why people would do such a hard thing. I explained it was to raise money and awareness for things such as cancer, flood relief etc., the boys digested this and were off to play.
Later that night we were eating dinner and the boys spit out the fact they wanted to do a marathon, I giggled as were all tired after running a block but not one to discourage I asked why. The answer hit me like a ton of bricks “For Mason and his skin, so people know he is not a bad person because his skin is bad” My heart melted and that night we searched the internet high and low. We found the Sunderland colour run and we found it was on Caleb’s birthday. The boys were all ecstatic “can we can we” they begged so that brings us to now…
We are running the the sunderland 5K color run to raise awareness and money for research into Ichthyosis. We are celebrating Mason’s skin and making it something NOT to be embarrassed by, something my boys and everyone around will feel comfortable talking about. We are running to make it so Mason one day isn’t half crocodile but instead a happy confident young man with a skin condition he can live with and possibly help teach others like him not to hide in there den’s but embrace their difference.”
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.