INCONTINENTIA PIGMENTI

Monday, 8 September 2014

IP/CHICKENPOX.

At the moment we are dealing with the normal childhood illness chickenpox. its been a very confusing time as we could not tell if it was chickenpox or Ip. as you can see from the picture above IP and Chickenpox are very much alike, we couldn't really tell until the blisters popped and they scabbed over but from looking back, I found that IP blisters were maybe slightly more yellowy. but this is only my oppion and im not a doctor so you will have to trust your own judgement on that.

Well thought id share these pictures of my IP angel, these were took on saterday night as we lit up some angel lights to show our support to our american IP familys who were doing the big crazy event. we are so very proud of them and what they put them selves through for the sake of all IP angels. well done guys, we are very proud. of you. xx

Saturday, 6 September 2014

some photos from today. xx

Here is some photos from the big event today, not to sure how much we raised for IP yet but as soon as I find out I will let you all know, dont forget its still not to late to donate to the IPIF to help our angels. thank you to anyone who has already donated and a very big thank you to everyone who took part in today's event.

HELP OUR ANGELS.!!!!

Well today is the day of the big crazy event, and we are still looking for your help to raise money for this rare genetic condtion. please follow the links below . xxx

Team Maisie Moo invites you to join us in this CrAzY FUN Event.

We hope you will all join us for this FUN event. We have IPIF Family Members participating in an Insane Inflatables 5K. They will be running/bouncing/walking/skipping for Maisie Moo on the Boardwalk and Beach in Seaside Park, NJ, U.S.A
Sat 09/06/2014.

We kindly ask that you choose the GOING option here to help us cheer them on from the sidelines and if you can by sponsoring their efforts to raise monies for Maisie Moo and all of her IP friends who are Family with us to the Incontinentia Pigmenti International Foundation (IPIF).

Check out this video to see what they will be doing for us on Sept 9th
Insane Inflatables 5K
New Jersey's Seaside Park | Insane Inflatables
http://insaneinflatable5k.com/preview-video-of-insane-inflatable-5k/

Our Goal is to raise funds through donations for the efforts made at this cool 5K to help all of our IP Family. IP is Incontinentia Pigmenti a RARE genetic disorder that Our IP Angel Maisie has along with many others whom we have met over the years and care very dearly about.

Even two of Maisie’s little friends with IP Kylie (age 6) and Amy (age 7) are NOT sitting this event out they will be participating by trying the Insane Inflatable Kids Course & Obstacles to try and help her and all of their other IP friends

We Look Forward to this Special Day and Hope You will All Share in Our Excitement

- Donations or Sponsors please mail check made out to IPIF - (mailing address) 78 Saint Moritz Dr, Erial, NJ 08081 U.S.A. - or - me and I will mail them out all together

- Donations or Sponsors via PayPal - Team Maisie Moo - IPIF - Inflatable 5K
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=U3N5GZ2S9Y6JJ

-Visit www.ipif.org to learn more about our rare genetic disorder, Foundation and Mission x

GO TEAM Maisie Moo !!!!

- All contributions are tax deductible
- IPIF is a 501(c) 3 organization, duly organized as a Not-for-Profit Type B Charitable Organization under the laws of the State of New York.

Preview Video of Insane Inflatable 5K | Insane Inflatables
insaneinflatable5k.com

LETS GIVE THEM HOPE.

Friday, 8 August 2014

LOUISE STORY

IP Family Story Shared - Hi I'm Sue and this is my daughter Louise (15) who was born with IP, she is so very caring and would do anything to help anyone, she brings smiles to everyone. No one would ever no the amount of pain she has been through since birth, she has had a lot of problems with her teeth, most of her bottom teeth are missing. Due to IP also it has caused slow learning which has been very stressful for her. We are currently waiting for an educational statement. So so very proud of her. and every single one of our IP angels are very brave XX

ELZIE STORY

My 2nd daughter was born with hyper-pigmentation & blisters in some area of her body. The doctors & nurses didn't know what's wrong with my daughter. She got umbilical infusion for 3 days in hospital, after the dermatologist saw her and she said my daughter can go home. When she was 5 months old, the dermatologist said my daughter got IP, but i don't know what should I do with IP in my daughter. then when she was 10 months, the ophthalmologist said, her retina is detach, but not totally blind. she still can see but not clear. (i don't know how to explain in english... sorry). MRI test is good. there's no abnormalities in her brain. Thanks god, there's no seizures, her nail is normal.... and I am waiting for her teeth, although she is 13 months old now.