LETS GIVE THEM HOPE.

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 !!!! 

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.

CRYSTAL AND GABRIELLA

Hello  My name is Crystal King, I have ip along with my youngest daughter Gabriella aka Gigi. When Gigi was born she had the trademark blisters and the doctors all thought she had some kind of staff infection. I actually had to tell them what it was, otherwise it probably would have taken them forever to figure it out! Luckily the blisters weren't extremely bad and only lasted a few months. At her 2 month checkup, I told the Dr that Gigi's right eye seemed to drop extremely low quite often. The Dr checked her eyes and saw they weren't reacting to light like they should. She immediately referred me to an ophthalmologist who discovered she had detached retinas. At 3 months old, she had surgery on both eyes to re-attach the retinas. Unfortunately it didn't last so Gigi was declared legally blind. At 6 months she developed a cataract in her left eye and came very close to losing her eye completely. She had another surgery to remove the lenses and stabilize the pressure in her left eye. During that surgery the Dr noticed her right eye was very close to doing the same thing so she removed the lens from that eye also. So now Gigi is completely blind in her left eye but we are pretty sure she can at least see light and maybe even shadows with her right eye. Besides her vision troubles, Gigi hasn't had any other serious complications from ip so far. And despite everything she has gone through, she is one of the happiest babies I've ever seen 

DEBBIE AND GABERIELLA'S STORY.

Hi I'm Debbie and my little girl Gabriella has IP which was a spontaneous mutation. We didn't know there was anything wrong until she was 3 months. We had noticed from around 3 weeks her left eye would drift out but when we mentioned this to healthcare professionals it was dismissed as normal lack of control over her eyes. When finally at 3 months a Dr referred us to a specialist we discovered that Gabriella was already more or less blind in the left eye and that there were issues with her right. The retina in her left had been pulled right out and had folded and abnormal blood vessels had leaked and scarred her lens severely. We spoke to a surgeon but decided against surgery because he wasn't confident he could save any sight and she might lose the eye altogether. Her specialist decided to keep a close check on the right eye but didn't think anything would go wrong there. However when we returned for a check up 2 weeks later the blood vessels had started growing very aggressively and were bleeding. Despite 2 extensive laser surgeries the Dr was unable to save her sight in the right eye and Gabriella was registered blind on May 15th 2013 aged 7 months.
Throughout all of this the specialist was sure that Gabriella had IP but she hadn't presented with any skin issues. Blood was taken and whilst we awaited the results a large blister appeared on her hand when she was 5 months old. This turned warty but we hadn't realised this was IP until our specialist saw her and knew immediately. The blood test confirmed it about 3 weeks later. 
Gabriella does have issues. She is not walking or talking yet but is incredibly bright. She receives a lot of support from physio and occupational therapists and they are confident her issues are from blindness rather than due to any physical manifestation of IP. Her teeth are not right. She only has 2 top teeth and these are misshapen and she does not appear to be getting any on her left side at the bottom. 
Other than that she is a very happy little girl whom I adore. She is smart and feisty which will stand her in good stead later in life. I worry about the challenges she faces both in terms of her blindness and having children later due to the ip as we have seen some of the worst effects of the condition.

ARIANNA'S STOY!!!!

This is our miss Arianna she is almost 8months now.... she was born with blisters all over her arms, legs, and some of her stomach. The drs thought she had some type of virus or bacterial infections so for four days she was on three different kind of antibiotics. While receiving meds the did constant test and blood work and when everything came back negative thats when they said they think it was IP. Arianna was found positive through biopsy and blood test. She is also a spontaneous mutation, no one in our family has it nor have we ever heard about this condition untill she was diagnosed with it . So far we are beyond blessed to say she hasn't had much symptoms just her skin and she did have to have lazer eye surgery but other than that shes doing awsome she hasn't shown any delays physically or mentally. She got her first tooth at 7month, her hair is still a little thin and she is determined to start walking. She does see alot of drs (gentic, dermatologist, orthopedic, eye dr and retnia specialist, neurologist, hearing dr, and physical therapist) mostly just to stay on top of her condition just so we can catch anything that may come up in time. Even though shes been doing so well we still deal with the "what if" that come with this condition so we try are best keep learning about this condition and most of all stay positive and strong for her and other two kids
This is our miss Arianna she is almost 8months now.... she was born with blisters all over her arms, legs, and some of her stomach. The drs thought she had some type of virus or bacterial infections so for four days she was on three different kind of antibiotics. While receiving meds the did constant test and blood work and when everything came back negative thats when they said they think it was IP. Arianna was found positive through biopsy and blood test.  She is also a spontaneous mutation, no one in our family has it nor have we ever heard about this condition untill she was diagnosed with it . So far we are beyond blessed to say she hasn't had much symptoms just her skin and she did have to have lazer eye surgery but other than that shes doing awsome she hasn't shown any delays physically or mentally. She got her first tooth at 7month, her hair is still a little thin  and she is determined to start walking. She does see alot of drs (gentic, dermatologist, orthopedic, eye dr and retnia specialist, neurologist, hearing dr, and physical therapist) mostly just to stay on top of her condition just so we can catch anything that may come up in time. Even though shes been doing so well we still deal with the "what if" that come with this condition so we try are best keep learning about this condition and most of all stay positive and strong for her and other two kids