INCONTINENTIA PIGMENTI

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.

JULIES STORY. XX

My biggest fear had come true when I passed IP along to my daughter. She began to blister at 1 day old. She wound up in the nicu for 7 days for dehydration. The nurses were afraid of her because the blisters got so bad so quickly. It was heartbreaking. We did see an opthamologist when she was 3 weeks old and all is still fine with her eyes thank goodness. She has the typical pegged teeth and missing several which I have been lucky enough ti find a dentist which has dealt with IP before-3 hour drive but so worth it. Vivyan is extremely intelligent and it's hard to believe she has been through so much and the lifetime of issues that may arise. Just knowing I will have to explain to her about the possibility of passing it along to her children break my heart! All of our angels are so beautiful

CORA'S STORY.

Hi I'm Nicky and my eldest daughter Cora has IP. She is a spontaneous mutation and presented with the characteristic blisters at 3 days old we had no idea what it was and neither did midwives or Doctors. She was put on antibiotics because they thought it was a bacterial infection. My poor baby and very very stressful for us as new parents. I didn't feel able to hug or touch her properly not knowing what it was. She cried alot and was not a very content baby. At 9 wks after being in and out of paediatrics we were referred to a dermatologist who thought it could be IP but wasn't sure as he had never seen a case before. He didn't refer us to anyone else. We tried not to worry too much. A few months later she came out in the next skin stages with the warts and whorls all over her tummy. Back to Docs again and prescribed hydrocortisone cream. Still no proper diagnosis. Finally we had an appointment back with the dermatologist though and he referred us to a Professor at Birmingham Childrens Hospital in UK and to the geneticists at Gloucester Royal. The Professor confirmed IP at 18 months old. And a few weeks later genetics confirmed aswell. We were then in the system but far too late really however. We visit the Ophthalmology at Birmingham once a year at the moment. She is 7 next week. Up to now she just has tortuosity of the veins in the back of her eyes. Fortunately no signs of eyesight problems. She has all milk teeth but a few are peg shaped and they are noticeably smaller than her younger sister who does not have IP. So far the adult teeth are coming through ok thank goodness. She has compromised immune system and suffers quite badly when she is ill. Lots of stomach issues too. Her toe nails are very awkward to cut and are thicker than normal. She is affected by bites and stings with anything swelling up like a golf ball and taking ages to settle. In terms of development she has exceeded all my expectations and surprises me every day. My worry for her future is mainly her potentially passing it on to her own children and having that conversation about the realities of it all. I am sure she will be ok and take it in her stride and at least we ourselves can support her whatever happens. Thanks for reading.