Thursday, 19 March 2015

HELP HANNAH!!!




Well I knows its been a while since I last posted but everything has been really quiet this end. My little IP angel has been doing well. But sadly one of her IP sisters from overseas isnt doing so good.  Hannah was born with Incontinentia Pigmenti like My princess and she has been suffering so bad lately. She has been in and out of the hospital relentlessly with not many answers, the last time was to do a complete fix to her feeding tube that dislodged including her stomach from the wall. She has also been granted a Make-A-Wish trip because of all she struggles with and her time to enjoy something like a family fun trip is declining. Through everything that poor Hanna has gone through and what she is still going through she always has the most beautiful smile on her face, she is so strong in her battle against IP and what ever life brings her way. But it breaks my heart to see this beautiful angel suffer the way she is,so some of us are getting together to try and bring a little smile to this beautiful little girls face. We would like to send her a box filled with smiles\cards and if you could help us do that it would be greatly appreciated and mean so much to her and her family. 

If interested please send all cards to - 

IPIF, c/o IP Angel,
78 Saint Moritz Dr,
Erial,
NJ 08081


by March 30th.

The website for IPIF is www.ipif.org so you can see we are for real  


Thank You


Susie. xxx
















Monday, 15 December 2014

One of the ways IP can affect adults.




Well everyone seems to talk a lot about how IP affects  children and you don't hear much how it affects adults, well these pictures where sent to me by a good friend and a lady who was born with IP.
for a long time now she has suffered with tumours growing in her fingers and she has had to get a couple of her fingers amputated . well just the other day she went into surgery to have a knuckle replacement in hope that this stops more tumours growing in her finger, so she doesn't have to loose another one.This is just one of the things that can affect adults. So as you can see it inst just children who suffer with this condition, and It is a bit up setting to think that the future is so unsure for these amazing and strong children and we will always have to play a waiting game to see what part of IP is going to affect them and when.






 

video



I want to send my love to my friend and hope that she is getting better and let her know I hope she inst in to much pain. and big thanks for sharing with us.





Monday, 17 November 2014

Awareness Items & Fundraising For Research


All items are available for the donation amount listed plus shipping. To order please private message Ipif IP, email ipif@ipif.org or the ordering contact information in the photos description if applicable - At the time of your request please include the item name, quantity, your email address and your complete shipping address. An invoice will be sent to you via paypal after shipping is calculated for your order and area.Thank YouIf you or someone you know would like to help raise funds for research please visit "Fundraising For Research" athttps://www.facebook.com/groups/ipifIncontinentiaPigmenti/789893654405434/





4x3 Magnet 
5.00 USD Donation plus shipping
*All items are available for the donation amount listed plus shipping. To order please private message Ipif IPor email ipif@ipif.org - Include the Item name, quantity, email address and complete shipping address. An invoice will be sent to you via paypal after shipping is calculated for your order and area.Thank You


    

Hand Made IP Awareness Key Chains 

$10.00 USD plus shipping(shipping costs will be calculated at the time of order & are available for worldwide shipping)50% of all proceeds will be donated to Incontinentia Pigmenti International Foundation Ipif IPTo Order this beautiful item made available by one of our families please visit Gerald 's Paracord Bracelet and Keys Chains facebook page athttps://www.facebook.com/pages/Gerald-s-Paracord-Bracelet-and-Keys-Chains/1506601946244516


       

11 oz Ceramic Coffee Mug - (white)

12.00 USD Donation plus shippingHand Wash suggested*All items are available for the donation amount listed plus shipping. To order please private message Ipif IPor email ipif@ipif.org - Include the Item name, quantity, email address and complete shipping address. An invoice will be sent to you via paypal after shipping is calculated for your order and area.Thank YouIPIF



    

Hand Painted Garden Flag

$20.00 USD plus $5.00 shipping to the USAshipping costs to other countries/areas will vary60% of all proceeds will be donated to Incontinentia Pigmenti International Foundation Ipif IPTo Order this beautiful item made available by Forever Memories https://www.facebook.com/pages/Forever-Memories/1519689464934374 please contact their facebook page or email forevermemories85@yahoo.com


       

4x3 Car/Window/Mirror Decal5.00 USD Donation plus shipping*All items are available for the donation amount listed plus shipping. To order please private message Ipif IPor email ipif@ipif.org - Include the Item name, quantity, email address and complete shipping address. An invoice will be sent to you via paypal after shipping is calculated for your order and area.Thank You

IPIF

       

16oz Travel Coffee Mug - (white)

15.00 USD Donation plus shippingDishwasher safe*All items are available for the donation amount listed plus shipping. To order please private message Ipif IPor email ipif@ipif.org - Include the Item name, quantity, email address and complete shipping address. An invoice will be sent to you via paypal after shipping is calculated for your order and area.Thank YouIPIF


      

Hand Made IP Awareness Bracelets 

$10.00 USD plus shipping(shipping costs will be calculated at the time of order & are available for worldwide shipping)50% of all proceeds will be donated to Incontinentia Pigmenti International Foundation Ipif IPTo Order this beautiful item made available by one of our families please visit Gerald 's Paracord Bracelet and Keys Chains facebook page athttps://www.facebook.com/pages/Gerald-s-Paracord-Bracelet-and-Keys-Chains/1506601946244516



      

Cooling Bandana 

5.00 USD Donation plus shipping Stars/Stripes, Royal Blue, Red Western, Blue Western Directions for use*Soak for 2-5 minutes in cool water*Cooling crystals provide up to 4 hrs of relief*All items are available for the donation amount listed plus shipping. To order please private message Ipif IPor email ipif@ipif.org - Include the Item name, quantity, email address and complete shipping address. An invoice will be sent to you via paypal after shipping is calculated for your order and area.Thank YouIPIF



BACK BY POPULAR DEMAND !!! FABRILY IP WEAR https://fabrily.com/stores/IPIFincluding Children's Hoodies, T-shirts and Onsies along with Adult Pullover & Zip Hoodies, T-shirts and Tanks. All monies raised will be used for Research, our IP BioBank Project and Continued Education World Wide. (Fabrily Ships WorldWide and orders can be purchased for Holiday Delivery) AVAILABLE FOR A LIMITED TIME ONLY - ENDS 11/28/2014







Monday, 27 October 2014


IP now has its own awareness ribbon!Many people shared their ideas and with much hard work a ribbon was created.Defined below is each part of the designs’ purpose and representation…- Light tips for the research still needed, hypopigmentation and all the unknowns- Orange and White text represent the Nemo Gene responsible for IP and the strength we find- Flowers for hope and remembrance- Tans and browns with marbling symbolize the many nationalities and hyperpigmentation Movement from dark to light colors represent past medical advancements to areas research is still neededFun fact: Wayne Allwine (the voice of Mickey Mouse) and Russi Taylor (the voice of Minnie Mouse) were married in real life!October is IP awareness month... Spread the word... spread awareness!



Wednesday, 22 October 2014

Cheriee and Ashlee's Story




We where so excited when our youngest daughter Ashlee was born. She seemed absolutely perfect when she was born, except she had a red dot on her wrist. Dr.'s said it was eczema. So we didn't worry about it. The next day at 2 days old she had gotten another dot on her leg. So we didn't worry. But when she was 4 days old she woke up with these yellow pus filled blisters all over her feet. legs, hands and arms.... it was horrifying. We took her to our local hospital. They did absolutely nothing. They said they didn't no what it was or what to do, and to go to our family Dr. So we did. Saw one dr there she didn't no so she brought another dr in. He didn't no either. So they refered us to another paediatrician. He was unsure as well... by this time we are scared and frustrated. But this dr sent pictures of her to Pittsburgh children's hospital.



Well that paediatrician called himself at 7:30pm that night. All he told us is to be at children's dermatology in the morning. We where so scared and wondering what was wrong with our baby. Dermatology automatically said they thought IP. So at 5 days old they did a skin biopsy. It was horrible. I had to hold her for it too. A couple days later they got the results and confirmed it. It was IP


Well i have to older kids as well. A daughter who is 17 and a son who is 13. I thought it was bad when my son had colic.... we poor Ashlee when she had her blisters, it was worse than colic. The thing was, drs couldn't tell me if they where painful or not. I think they where. All Ashlee did was scream. It was like she wanted to be held, but when you held her she would still scream. It was so scary. Then having to be careful so the blisters didn't pop. I thought i had a good friend but found out she wasn't a friend at all. She wouldn't even see my baby or me because she thought it was contagious. I told her it wasn't. Plus if it was don't you think I'd have it too. Well needless to say. I stopped talking to her. Well the month went by. Things were getting easier to handle. Around a month old we saw opthamology . Now I'm use to blood guts etc... but when things happen to your kid is so different. I had to hold her while they numbed her eyes then i think put like a mirror or something in behind her eye ball i think. I was trying not to watch much. They said everything looked good... oh thank god




As the months past she was still had her blisters and some swirl marks. Months down the road they wanted genetic testing done. That confirmed IP too. She then had a brain MRI... they said everything looked good but has white matter on her brain and narrowing blood vessels. But they are not worried about it because it does not seem to be effecting her. She then had what they called eye surgery. Besides being far sided everything was good.


As of today she is 2 1/2 yrs old. She is doing great. She gets a few dots/blisters every now and then. Also has faint swirl marks. She is heat intolerant. She has stomach problems to where she has never had a formed stool. She is allergic to milk and soy to. She has some crazy hair and hair loss. She has 2 different teacher's that both come to our house once a week to help her with speech and learning. She is extremely smart though. Ash has problems with her nails and also her bottom teeth are peg shaped.








Lorelei and Avery's Story.

This is Lorelei at birth, with blisters on her left arm (and inner left calf, not shown) she is 13 months now with no other symptoms to date.. she was born with the blisters which baffled the doctors. They immediately assumed herpes, which both her father and myself were negative for to begin with, and she was a C-section birth. She went directly to the NICU where she spent 10 days undergoing every test under the sun (which came up negative for herpes)and was treated intravenously for herpes. After 7 days the blisters began to fade almost completely away and reappeared on day 10. We were able to take her home on the pretenses that we see an infectious disease Dr. and a dermatologist. At 13 days old we saw the dermatologist and she had a biopsy done. At 15 days old we saw the infectious disease Dr. who immediately dismissed the possibility of herpes or any other infectious disease. 2 weeks later we received the diagnosis via a phone call from the dermatologist who explained that it was a rare genetic disorder, we needed to see a genetics Dr. immediately, and if I wanted to know more I could go ahead and google it because she had never seen it before. Needless to say I did just those things, and was able to get an appointment with the leading genetics Dr. in Tampa Bay. We found out that Lorelei's IP was a spontaneous mutation, and what we may be able expect. We see a number of specialists, but so far everything has been okay. Lorelei just turned 13 months old and we hope and pray for the best every single day. We have found great comfort in the fact that we are not alone, because it felt that way initially. We are so very thankful for all of the IP families sharing support and spreading awareness.








This is Avery after having her eyes dilated at the ophthalmologist. She is 11 months old and has swirls, 4 teeth have come in so far and 1 looks like it may be pegged but so far skin and teeth are her only symptoms.