To all the Mothers, Fathers, Grandparents, Aunts, Uncles, Sisters, Brothers, and Friends,
I pray you will all read this and send it to everyone you know so I can get my daughter the help she requires.
MY DAUGHTER HAS A FATAL ILLNESS called "Congenital Hydrocephalus" and I need to relocate her and I to California for the specialists to do Brain Surgery.
We must be actual residents of California. I barely have money to pay our bills, but BRAIN SURGERY, REHAB, AND WHO KNOWS WHAT ELSE, praying she survives the surgery and has no complications, as this surgery is MORE THEN JUST SERIOUS. IT IS THE BEST CHANCE SHE HAS TO SURVIVE, AND THEY HAVE DONE IT MANY TIMES BEFORE, and perfected it, saving countless lives.
The Ronald Reagan UCLA Medical Center is known for their outstanding Medical Care and Treatment and their extensive research. It is still a very serious surgery as all surgeries are and we have no way of knowing the outcome. I do know that the UCLA Mattel Children's Hospital is one of the most advanced treatment facilities that deals with this illness on a daily basis.
My daughter is going to be 16 and just got her drivers permit, and in all the years of taking her for check ups at the doctors, had I known that this illness was causing any problems whatsoever let alone it being fatal I would've done something many many years ago. I had the most prominent doctors and hospitals that ARIZONA had and even through the years, was told she would be just fine. She was taken at 32 weeks and came home after almost 6 weeks and the doctor (Dr. Foley, Phoenix Perinatal), told me and my then, 17 year old son, that he was so sorry he delivered her, that he miscalculated the measurements in her brain on the ultrasound and he should never have delivered her and kept apologizing to me. I almost fainted.
I took her to so many doctors as a child I lost count, to try and find out what was wrong with my beautiful little girl, because she had so many symptoms that made no sense. The doctors at Barrows neurological told me she would be just fine and to treat her like a normal child however she was far from being a normal child.
It took me almost 11 years for someone to actually do another MRI of her brain and it wasn't good at all. I was told by many different medical people, doctors, nurses, etc. to get her out of Arizona. I was told to get her to California where they have been doing research on the brain and have specialists that have perfected surgery to fix the problem. She was never shunted, which is the standard of care of any child born with this illness, however Dr. Harold Rekate, at Barrows Neurological, who by the way, came highly recommended by Dr. Benjamin Carson, a neonatal neurosurgeon in Baltimore Maryland at Johns Hopkins Hospital, told me to treat her like a normal child, and that she would be just fine. Dr. Rekate discharged her at approximately 8 months of age, never to see her again. Dr. Manwarring who was at Good Samaritan Hospital/Phoenix Children's Hospital, where my daughter was delivered by emergency at 32 weeks, as both hospitals were together at that time, disagreed with Dr. Rekate and wanted her shunted, but we as her parents were never given a choice, we were just told what they were going to be doing and that was that.
If we had been given the facts and told the pros and cons of both choices we would've made the right choice for our child and have had her "shunted", knowing that would save her life no matter what, because they didn't have any other way to fix this back then; also knowing how difficult a childhood she would have, being in and out of the hospital and having the shunts replaced because of infection or being broken or for a multitude of different reasons. But I would not be in the situation I am in right now, which is that without surgery at UCLA Mattel Children's hospital, she will not survive because she was never shunted. (For the record, I have been a single mother for almost 14 years now, and received very little help until just recently).
THE OTHER ANOMALY:
They also found three areas of her brain, that in the report says "missing white matter". That means that there are three areas of her brain that are disappearing, why? The Radiologist did not give a diagnosis as to this particular problem in her brain which has nothing to do with the Hydrocephalus. It is the job of the Radiologist to make a diagnosis as to what he/she sees on the films or scans and these particular Radiologists in both cases chose not to, which begs the question, why? Both MRIs were read by two different doctors and this most recent one was worse. I placed a call to speak with the Radiologist personally to find out why there was no diagnosis and this Radiologist chose not to speak with me and again it begs the question, why? None of this makes any sense as I was in the medical field for over 20 years on the East Coast and have never seen anything like this before in my life.
She just had another MRI done about five weeks ago and it is worse than before. She has had symptoms and pain all her life. She has learning disabilities and has struggled all her life. All I ask is that you save one child at a time as this is of epic proportions. I just recently found out that approximately 4 billion babies and children are dying every year from this horrific illness worldwide, and why is that, when there is a way to stop this from killing any child, either with a shunt or a new procedure called a third ventriculostomy?
I spoke to the UCLA Mattel Children's Hospital and they told me to get her there immediately when they found out that the doctors had never shunted her. They have been doing major research on the brain for quite a few years now in California and have perfected a surgery that will save her life, among many other new discoveries that they have made about the brain.
Without money I can't do anything and I have no money, and pray that these donations start coming in, or I don't know what I will do.
When she was growing up and showing symptoms here and there I took her to the doctor; I took her to many doctors and all they said was she was fine. If they had done an MRI they would've caught this so much sooner, than we would've had time BUT WE ARE OUT OF TIME NOW, IT'S JUST ME AND MY DAUGHTER and a 7lb. therapy dog.
PLEASE GIVE HER A NEW BEGINNING SO SHE CAN LIVE HER DREAMS. ONLY YOU CAN CHANGE THE LIFE OF A CHILD AND RECEIVE BLESSINGS FROM GOD....
(HOW MANY PENNIES DO FIND ON THE STREETS EVERY DAY OR THE BOTTOM OF YOUR PURSE OR UNDER THE SOFA CUSHIONS OR ON THE FLOOR)
YOU CAN MAKE A MIRACLE HAPPEN. There are no blessings more important than the life of a child, and there is nothing more important than saving that life.
What if this were your child, your sister, brother, your mother or father, what would YOU do?
I want to put this on the news to let people know that this illness affects so MANY babies and children, worldwide, as 2-3 millions babies in Uganda alone, and the surrounding areas are born with it every year and most die, but NOW THERE IS HOPE. I want to scream it from the rooftops that there is a cure.... is anyone listening?
Please, if you care anything about the LIFE OF A CHILD, please PASS/REPOST this to everyone you know and they to everyone they know and help me. I am a single mother, and all alone; I have no one, except my beautiful girl. Please "PAY IT FOWARD".....
You can't tell by looking at her that there's anything wrong except she has a deformity in the back of her skull, but her hair covers it and you can't see it. She has a lot of symptoms and they're getting worse, and is taking more and more medicine. I also have all her medical records from birth.
I need Foundations to get involved in doing what they do best, cut through all the red tape to do the paperwork necessary to set us both up on the proper assistance immediately. What Foundation do you call? Where do find the names? Believe me I've tried. It's like a needle in a haystack. This was recommended by a stranger who saw my post on Twitter and suggested I put this on here; that the world has good people and they will help my daughter. I have strong Faith in God and pray everyday and have to believe that you will help.
PLEASE HELP SAVE THE LIFE OF A CHILD....MY CHILD....and the billions that are afflicted with this every day, and no one knows anything about it!
If everyone donated five dollars ($5) so they could save my daughters life; I would in turn make her the Ambassador and start a Foundation to raise not only money, but awareness that this disease, this illness is killing our children and that it can be stopped one child at a time.
THANK YOU AND MAY GOD BLESS YOU ALL.....