mixed metals, Swarovski Crystal, all bracelets include our purple and green awareness ribbon charm $35. Breciated purple and green precious stone, bright purple and green awareness bracelet.
These are a limited time only
All designs available
Congratulations to a wonderful fundraiser in Chicago!!!
And thank you to Kelly Churchill for working with RARE!
⦁ I was 18 when I found out I was pregnant. When I was 3months pregnant, I had passed out at work and hit my stomache on a metal table. when the ambulance got there, they said my sugar was 24 (way to low). They got me to the hospital and said the baby was fine I had nothing to worry about. 2 weeks later, i started cramping really bad, I was rushed to the hospital and was told that i was probably miscarring but they decided to admit me over night. I was released the next day, and was told to go home and rest.. A month later i was rushed back to the hospital and was told that i was trying to deliver early, I was given medication to stop my contractions and sent home I went from 4 months to the time i delivered my son going into labor and they always gave me medication to stop him from coming. I was put on bed rest at 7 months. Johnny was due May 19, 1999 and they finally gave me medication to start my labor on June 6, 1999 and he was born 45 mintues later…
During birth I had passed out, and finally the doc got me to wake up and pretty much told me if i didnt push my baby would die. So i pushed. When he was born he was white and had a cone shapped head. The doctors told me that he was absoulatley fine.. We got to go home within 48 hours of him being born! He was such a great baby, he did everything early and was sitting up at 6 months and rolling over.. Never even thought there was anyting wrong with him!
1 day old
11 days old Johnny was such a great baby, he did everything early and was sitting up at 6 months and rolling over.. Never even thought there was anything wrong with him.
All a sudden he stopped doing anything and could not set up at all by his self. When he was 6 months old he stopped breathing on me and was put on a sleep apnea monitor. Finally at 11 months old they did a MRI. I was notified by phone 2 weeks after the test was done that my son had a rare disorder called Bi lateral open lipped schizencephaly.. I was devasted and felt like I did something wrong even though i knew i did everything I was suppose too. I went and got on the computer tried to find out what this was and what caused it. The doctor told me that Johnny was his first case to diagnose with this in Oklahoma. He was put in therapy at one year old and has continued it since. I was told that Johnny’s schiz was so bad that he would probably die before his third birthday and be mentally retarded.
From that day on we took it day by day. Johnny started having ear infections at 1 year of age and had to have tubes put in every six months or so. When he was two he had to have surgery on his middle ear where they said he needed to have a pulip removed. When the doctor got in to the ear, he noticed that he had a tumor that was bigger than a softball.
He decided to not go any further. He came out to the waiting room and I could just feel that there was something wrong! We were sent to Childrens Hospital Oklahoma City. They admitted Johnny to the hospital and scheduled him for surgery that next morning. We were told that this was a dangerous surgery. They had to do a mastoidectomy and also removed all his hearing bones in that ear. He had a Cholestoma (tumor) that had damaged the inside of his ear. Which made him deaf out of that ear. Family from both sides was there for us during this time and It took 12 hours to do the surgery, then he had to stay in th hospital for 1 month untill he was infection free. When we was sent home, we had to administer iv antibiotics every 6 hours, to keep infection from coming back.
Every 6 months he had to have surgery on that ear so they could go in and clean it out.. He has had over 30 surgerys on the ear alone.. At 2 1/2 he had to have surgery on his eye muscles his eyes would wonder up and down. He has not had any problems since with his eyes. He does where glasses for stigmatisms. At 3 he had surgery on his right hand to release his tendons.. this surgery made his hand worse. He is paralyzed on his right side, he has had braces and cast on his leg to help release his muscles… At age 5 he started to have some stomache spasms, the doctors could not figure out what was causing this, so they kept sending us home with pain meds . Finally at age 6 I took him to the ER and told them that I was not leaving untill they did something. He was always doubling over and in pain. They finally did a MRI and ultrasound on his stomach.
It ws then they found a blockage to his right kidney. He had to have emergency surgery. They went in and cut away the blockage and some of his kidney. He finally stopped having as much pain in his stomach.. At age 6 he also was finally started on regular seizure meds Topamax. He was already on ativan and Diastat for emergency use.. They had tried him on several seizures meds buth he could not take them. Topamax did help with the seizures.
By age 6 he finally got his Baha hearing device placed. I remember the day he finally go his box put on and the doctor told me to cover his good ear and whisper into his bad ear. I whispered I LOVE YOU BABY BOY and he looked at me with a smile and said I LOVE YOU TOO MOMMY
When I knew Johnny heard me say I love you and His little voice responded back I was in tears.. My baby could finally hear!!!… Then we walked out side and he looked at my mom and said nanny I hear birds and its sounds beautiful. This device only worked for about 6 months before it started causing severe migraines. So he no longer can wear his device on that ear.
At age 11 1/2 He started having some really bad abdominal pain once again. I took him to the ER and was told that he had 5 tumors in his uterer and was taken by ambulance to Maine Medical Childrens Hospital, They imformed me that it was not tumors that it was kidney stones. He had to have a neprostomy bag place in his back to help drain the tube.. We went through about 6 months with these tubes, finally we were sent to a nephrologist and was put on some meds that will help with stones. He was in and out of the hospital every few weeks for about 7 months. We were told that the seizure meds he was on was what was causing his kidney stones. Finally This past January they took him off the seizure meds. We was told since he was seizure free we no longer need them.
We moved to another State so made him appointments with new doctors. Was told that he had been misdiagnosed. I decided to get a second opinion. He has also started to show signs of possible seizures. He went seizure free from 2010 – 2014. I had made a appointment with a different Neuro and told him what the first one had said. Once the test results came in, we went in to find out results.
January 2014 Johnny started having seizures again. He was seizing all day everyday and we never knew it. His Neuro order a bunch of new test. We finally got a new MRI (last one he had done was in 2000) The doctor informed me that he does have Bilateral Open lipped Schizencephaly, Porencephaly,Seizure Disorder, Cerbral Paulsy. I knew about all except the Porecncephaly. He started Johnny on new meds and they help alot. He does still have seizures when he gets stressed or over heated.
In summer of 2014 we were able to purchase him a cool vest and a local business also bought him a back up. This way he can go outside and play.
Since getting the seizures taken care of he is doing great. He is now 16 years old and a Junior in high school. When we moved to Louisiana he had some IQ testing done. He had always been in special needs classes. (which i faught and hated) I always asked please test him, I know he is smart. Well finally Lousisiana did. He scored so high that he is now in regular classes. He just finished his first year with A’s and B’s. He wants to go to college and be a movie director.
I will tell you all this. when he was 3 1/2 he was trying to walk and just couldnt do it alone without falling. My mother in law took his shoes, and pacifier to a church in Florida and had them prayed on She came home and put those shoes on him and with minutes he was walking by his self.. We was told that he would never walk, talk or do anything. He does it all. I believe that he does do everything because of God.. Prayer is everything.. Remember the doctors told us by the way his MRI looked that he would pretty much be a vegetable and would die by three years old.
Thanks for reading our story…
Rockies vs The Mets
Star wars We are RARE theme game.
Fundraiser for We Are RARE with Stars wars theme is a chance
to get out and support and learn about the disorder Schizencephaly and mingle with the Star wars characters.
Bring your friends and costume pictures sent to We Are RARE will be featured on our website.
Please try to incorporate purple and green to support Schizencephaly Awareness
This is going to be a fun event that will bring awareness to Schizencephaly and celebrate Star Wars!
Special rate link coming soon.
Make a statement and help raise awareness
All donations benefit Teyah
Adult S,M,L ,XL.2X. 3X
Please allow 4-6 weeks for shipping.
Leslie is an inspiration to many families, never hesitating to stop and chat or just joke around lifting everyone’s spirits. She is an inspiration because she lives with the more severe case of Schizencephaly. Bilateral. She faces challenges daily that some of us never think about.
We first met her two years ago when she was graduating high school and she has remained a big voice for our children with this disorder.
Congratulations Leslie. You truly are a hero to many. She wanted to say a bit about herself in her words.
“My name is Leslie and I have bilateral schizencephaly. I’m 20 years old. I live in Camden county ga (the Florida Georgia line). I have right side hemiplegia. No depth percision or hand eye coordination. Sometimes I have some mild seizure activity. I am non verbal. I went to mainstream high school and survived. My high school major was fine arts / business. In the next year I went to Roosevelt warm springs vocational school ( the best decision I have made in my life) where I studied basic business and I held multiple jobs related to business. I bloomed as a individual and independent young adult. I am fun loving and love most people. Love to blog when my mind lets me. I like making people smile. I love bright colors! I absolutely love to craft”
Join We Are RARE and be a part of Purple and Green night at the Orlando Amway arena April 11th
Tickets are discounted through Our link and directly contacting Matan Cohen with the Orlando Magic.
100 tickets sold get our kids on the half court. For more information please contact
Ticket Sales Representative
(407) 916-2835 Direct
(407) 916-2909 Fax
Parents Terrie and Larry Randolph write
Ethan Wayne Randolph born in Dayton, Ohio on Nov 3, 2008 with Schizencephaly. We initially were told of his condition during an ultrasound at 7.5 mos gestation. At that time we were told the best thing we could do not only for Ethan and ourselves but also for society would be to go out of state and have a late term abortion. The Dr stated it would be for the best as he would most likely be nothing more than a burden and would never have a quality of life as he would most likely not ever speak, play, walk or anything “normal” babies and children do. To this day I can still vividly hear those words being spoke to our family. We knew Ethan was a special gift that was being given to us and we were going to keep and love him for as long as we could even if it was to be for a short time. Less than 12 hrs old he was sedated for the first time and transported to children s hospital for an MRI to confirm the diagnosis.
The Dr couldn’t have been more wrong with what he would do and could do! We couldn’t be more proud of our little guy and all the progress and obstacles he has faced and overcome. He started therapy at 4 weeks old having PT and OT. He has since had aqua therapy and speak therapy as well. I wholeheartedly believe that he is doing as well as he is today because of his willpower to fight through the struggles and all of his amazing therapists who have worked with him over the years. To us he is a “normal” 6 yr old little boy who has a different kind of life. He has been through a lot but continues to fight the battles life throws his way. He started walking when he was 3 and just recently underwent a club foot with tendon release and transfer surgery on his right foot and leg which has had an amazing impact on his walking ability
. Along with his Schizencephaly he also has several other diagnosis such as Cerebral Palsy, Polymicrogiria, Scoliosis, Sensory Processing Disorder to name a few. These will never hold Ethan back in life because he will not allow them to. Today he is such a happy little boy who just wants to show everybody how much they are loved, just as we have always shown him. He enjoys doing things other kids do, he just has to work an little harder. He loves to run and play and get into mischief as any child does. I have always said he is my littlest hero from day one. He may only be 6 but he is such a wonderful and special little boy who has probably taught me more than I have him.
So everyone understands the legality of making an awareness day official.
- We have to be consistent and show that we have done this for a multiple amount of years. ( This being our third) It has to be documented ( which we have online and via newspapers)
- The letters have to go through your state senate and congress ( we have forms for every state for anyone wanting to send them out below)
Only then will the awareness day be recognized as it goes through congress. State officials ( governors mayors etc ) do not have the power to make a day official. that is why we keep telling you families to get our forms and send them to your actual lawmakers.
It is imperative.
Official forms addressed to each senator and congressperson in every state are provided below. It is the ONLY legal way to make a day of awareness happen. Just trying to clear up some confusion so you all understand a governor has no authority to make anything legal or official.
It literally takes an “Act of Congress”
If we want to see positive change we have to follow the legalities involved in making this happen. Find your state from the list below, download and send to each of your state senators.
Just the contribute to the amazing accomplishments of our children who have rare brian disorders is their ability to participate in sports.
Sports can be an instrumental tool in helping your child socially in addition to promoting mobility and healthy exercise. Similar to the different therapies (i.e. physical, speech, occupational, and stress), the stretches, muscle repetition and flexibility techniques can all improve range of motion. Given cerebral palsy is common with children who have Schizencephaly and many other brain disorders, it is critical to do any activity that encourages the use of normally dormant muscles.
Therapy can become very taxing on a child. He or she often associates it with work. This is another benefit of getting involved in a sport, is the implication of implementing a positive activity that your child can have fun doing. Even an individual who is not physically challenged has more interest in doing something when they enjoy it versus seeing it as work.
So what sports are recommended? Well that depends on the interests and abilities of your child.
Here are some activities that our children participate in…
Gymnastics – flexibility and muscle strengthening
Baseball – coordination and range of motion
Dance – muscle retention and coordination
Our schizencephaly parents, what sports or activity is your child involved in?
As parents of children with Schizencephaly. This is why we must bring more awareness to our community, medical and educational professionals.
I began realizing the seizures changed me. My balance was badly thrown off, I had vertigo, and I spaced out to where I could see people talking, but I just stared with no emotion. I smiled on the outside, but felt raged madness on the inside. I leveled out somewhat, but still had waves of those effects for five years.
— Phillip Mims
Excerpt from the Book: Schizencephaly – Angels with Broken Wings (Authors: Tricia Dennis and Stephanie Zeimann)
-I dont think theres another kid with as many disorders as Connor has: congenital hydrocephalus-hypotonic cerebral palsy,cortical dyplasia,neural migration,partial agenesis of the corpus callosum-Lennox Gastaut Syndrome-epilepsy-Reactive airway disease–rotary nystigmas–of course he has a shunt and g-tube.Even though he has all of these disorders I think he functions really good–its the seizures that have taken their toll on him and made it where he cant learn and retain information–Since he cant talk or communicate I really dont know what he is thinking or if he knows what things are–besides Me and PawPAw –I tried to get him to play with a nook but with Connor everytime you grab his hand and try to get him to do stuff with it he snatches it away–so I just read to him (im not sure if he knows what I am saying) and show him pictures and videos on it–the screen is so small Im not sure how well he can see it
Connor is not on the developement level of a 11 year old–the therapists have told me he is on the level of a 8 month old mentally. I think theres alot more going on in his brain than he gets credit for because he cant express himself–recently we found out that his hip is popping in and out of its socket causing him some pain-and hsi foot has been deformed for a long time and they have just now decided to do something about it when I switched orthos Connor has never responded to pain like we do–he rarely ever cries and things that would cause anyone else pain he acts like he doesnt feel it.
Connor used to always have a smile on his face but at some point he quit smiling–I think all of the seizures and hospital stays took their toll on him–he has been in the hospital more than 60 times alot of it for repiratory isuues and he really gets mad when he gets suctioned or a mask is put on his face for oxygen or to get a breathing treatment. Since I started keeping him at home because he is bigger and its harder to go places because my van is not handicapped and I am the only one that can still lift Connor–I still carry him and put him in his wheelchair and carseat I noticed how much better his breathing has gotten and he hasnt had a hospital stay in over a year and a half for respitory issies!! He is allergic to animal dander-dust-pollen etc–he is kinda like a bubble boy and has to stay at home-everytime we go to a dr office he comes home wheezy and junky and a common cold can put him in the emergency room or ICU. Anyways I want him to be a Schiz KId of the week–also I tried to sign him up for the Birthday Wishes but it says it cant find the web page–his b-day will be July 30th and he will be 12 years old–
Blendtec Corporation is a company that is wanting to help families live healthier lives.
They have offered to assist families with an industrial blender for blending diets and nutrition. If you would like to ask about assistance to help you with a blended diet for your child please contact them today.
Thank you so much to Nancy Grace for mentioning our company and shouting out about Noah and Danna’s Banner raising! We had an amazing time and it was a great awareness success.
Between the week of April 22nd and the 25th Nancy Grace will be doing a small piece towards the end of her show about Noahscart.org and the banner being raised and flown from St Augustine to Canada!
We are really excited to have her showing support and continued help since 2007!
We are sponsoring two fundraising efforts with It’s All About Life to help a family in need. Please support us with this by purchasing any of the following t-shirts and/or iPhone cases.
Order a “Touched by an Angel” iPhone by following the link below! Order form is on the right-side of the It’s About Life webpage.
Click Here to View
Order a “Schizencephaly Rocks My WORLD!” shirt today by following the link below!
Click Here to View