Thursday, 3 April 2014



I just wanted to give you all an update. as you all know i had my little girl but she had become ill. Well it turns out my little princess was born with a genetic condition called Incontinentia pigmenti.  its a rare genetic condition which effects her in so many ways ( skin,hair,teeth,seizures and other thngs).  and as she gets older things are just going to get harder for her. because the condition is so rare there inst many doctors that can tell us what to expect for her future. so what im trying to do is raise awareness for this condition so maybe more research can be done on it. so that in the future if any other children are born with Incontinentia pigmenti they will have a better start and more help. and maybe more can be done for the little angels who already have this illness. 

Incontinentia pigmenti blog.

facebook page.

Incontinentia pigmenti website.

I want to ask a big favour from all of you, would you please help me to spread the word about this condtion, so we can help other children like my princess.


  1. Awareness is the first step, Susie! My grandson is missing part of his 3rd Chromosone. That small missing piece held 81 different genes that he does not have and it has effected his ability to do many ordinary things. He'll be 9 this year and can barely talk. (His 4 year old brother can be understood better than he can.) He was a year old before he ever learned to crawl and nearly 2 before he mastered walking. His IQ is very low and he's also very short for his age and has to attend a school for special needs children. Dealing with the disorder, and the frustration of knowing so little of what to expect gets easier with time, so hang in there. Just give that baby a hug every day and remember, you were given a special child because 'you're' so extrodinary. Not everyone can handle special children but you were given the oppurtunity for a reason. Embrace it and hopefully your journey will help someone else.

  2. thank you lily, you wouldnt think anything so small as a gene would create so many problems. im just lucky maisie hasnt been effected with the mental delay part but her physical development is a tad still learning that there she is effected by more then what i yet know . and she has a long road a head of her. xx

  3. Beautiful baby...I shared on Facebook and twitter..hope it helps

  4. thank you so much traci, it means loads to me. xxx