Tracey - posted on 02/19/2010 ( 2 moms have responded )
A Letter From Hannah’s Mother...
On May 24, 2003 we welcomed the birth of our third child, Hanna She was absolutely perfect. She grew and developed normally, even somewhat advanced for her age. She sat on her own at 4 months, walked unassisted at 10 months, and was speaking in sentences at 12 months. Hannah was very active and determined to keep up with her two older brothers. She was full of energy, full of life, full of mischief, and full of personality. She began preschool at the age of three and we watched in amazement as she learned her alphabet, counted to 20, learned to ride a bike, recited her phone number and address, and exuded confidence.
Then on October 11, 2006 at the age of 3 ½ years, Hannah’s world was suddenly turned upside down. While playing with her grandfather she tipped over from a sitting position, lost consciousness and suffered a series of seizures. Grandpa immediately called 911 and she was rushed to the nearby hospital in status epilepticus, a life threatening condition of repetitive unexplained seizures in a row preventing the ability to breathe. She was airlifted by a medivac helicopter to one of the best children’s hospitals in our area. Over the next 3 days in ICU, Hannah underwent a CT scan which was normal, extensive blood work which was normal, metabolic testing which was normal, and an EEG which was normal. We were sent home with no clear answers as to what had happened to our little girl. Two days later, the seizures returned and she was transported by ambulance back to the Children’s hospital and placed on an anticonvulsant called Trileptal. Again, she was sent home. But the seizures didn’t stop. Within 2 weeks she was have more than 30 tonic clonic seizures (grand mal) per day, atonic drop seizures, causing her without warning to suddenly fall to the ground, more myoclonic seizures than we could count, and repeated episodes of status epilepticus. Her EEG showed global seizure activity and her frontal lobe was constantly in a seizure state.
The next three months proved to be a living nightmare for our entire family. Hannah was admitted to the hospital for a total of 41 days in three months with uncontrolled seizure activity. Within 3 weeks of her first seizure in October, Hannah had lost her ability to speak, to walk, to control her bowels or bladder and to interact with others. She even lost her ability to recognize Mom and Dad. It was heart breaking. She would lie in her hospital bed rocking and rolling around on her back, completely non-verbal. She was not engaged in her world.
Neurologists and Epileptologists tried in vain to stop her seizures with multiple anticonvulsant medications including Keppra, Clobazam, Clonazepam, Trileptal, Lamotrigine, Lorazepam, Paraldehyde, Phenobarbital, Valproic Acid, and high dose Pyridoxine. We started Hannah on a ketogenic diet, a medically supervised high fat diet that is sometimes used to treat seizures in children that have medication resistant severe seizure disorders. While this originally decreased her seizures by about 20% it was not enough to stop the seizures and therefore stop the brain damage that was occurring. In January 2007 she was started on an experimental treatment called Intravenous Immunoglobulin Therapy and again, the initial response seemed promising, but the seizures and resultant brain damage continued.
Eventually, we were brought into a small family room at the hospital to discuss Hannah’s deteriorating condition. When we entered the room we were met by two neurologists and a social worker, who sat at a table with a box of Kleenex placed in the center. As a health care professional and Hannah’s mom, it was clearly evident that the prognosis was very bad. We were told that Hannah was suffering from Idiopathic Lennox Gastaut Syndrome, a severe and incurable epileptic encephalopathy for which no cause can be identified. My heart sank as her prognosis was described to us. Lennox-Gastaut Syndrome has a 3-7% mortality rate. Lennox-Gastaut causes severe mental and physical disability. 78% of children with Lennox-Gastaut Syndrome will be institutionalized. The seizures associated with Lennox-Gastaut are intractable to treatment and will continue relentlessly destroying her brain. The prognosis for Hannah is grim. This is a catastrophic pediatric diagnosis.
We were completely numb. The facts were in front of us. I asked the doctor if there was any chance that she could recover. Was there any chance that the diagnosis was incorrect? The answer was NO. “Lennox-Gastaut syndrome is characterized by three distinct features. Hannah had all three. There was no mistake”. I cried and hugged the neurology nurse and said, “What do we do now”. Her response will forever be etched in my mind; “Take her home and enjoy her. This is going to get very bad, very quickly”. How do we give up on a child that has so much to offer this world? Is there truly no cause for this disease, or does this simply translate into the fact that the cause has yet to be discovered?
The answer was clear. If the medical community is certain that there is no known cause for her disease, how then can they be certain that there is no cure. We will never find that which we don’t seek.
The goal of Hannah’s treatment from the first seizure had been “symptom relief”. Seizures are merely the symptom of an underlying problem. If we can’t control the symptoms with medication after medication, then the disorder becomes “incurable”. We were determined to continue to fight for Hannah’s quality of life until no stone was left unturned. Giving up on your child was never an option, even when others did.
Endless hours of research through every medical textbook I could access, every medical journal , and every internet site I could find, resulted in a connection to an amazing women, Azita. I learned of Clayton a young boy who had suffered from Lennox Gastaut, through a rather obscure magazine article posted on the internet. Clayton had received Fetal Stem Cell therapy and his seizures stopped. This was a chance, and a stone not yet overturned. I wrote to the newspaper and asked them to forward my information. The magazine agreed and within a day, we received a phone call from Clayton’s mom, Azita.
Our sights were set on trying this treatment for Hannah. Of course we were skeptical. It is human nature to question the unknown. I have worked in the health care field for eighteen years and thus I look for empirical evidence, clinical reports and the like. There is however one distinct problem. There is very little data available on the use of fetal stem cells. The science has been overshadowed by the ethical and religious battle surrounding it. The next obvious flaw in the traditional system that I had worked within for so long was this; how do you do a double blind placebo study on a child with Lennox-Gastaut Syndrome. How do you control the variables to make the study meet scientific approval? The answer is clear. Some children, possibly my daughter would either receive a potentially lifesaving treatment or normal saline IV solution. This is a death sentence for the unfortunate child who receives the placebo. The next flaw was this; how long is the anticipated wait for stem cell therapy clinical trials. I spoke with a cellular biologist and was told that fetal stem cell would likely never be approved in this country, and other forms of stem cell treatments for neurological disorders are most likely 10-15 years away. If my daughter was considered mentally retarded within 3 months of her first seizure, what will be left of her brain in 10-15 years, if she were even able to live that long? Children with Lennox Gastaut don’t have the luxury of time. Every day, more and more damage is occurring. The final decision to embark on a journey out of the country was an emotional decision, without question. We promised ourselves and our daughter that we would travel to the ends of the earth and back in an effort to help her.
We did not have the approval of our neurology team. We were told that it “couldn’t possibly work”, we need to accept Hannah’s diagnosis and prognosis and that “denial was a difficult emotion to overcome”. Our local community rallied around us and raised the funds to send Hannah for her first treatment. When the neurologists learned of the fundraising, they told us “this money would be far better spent preparing your home and your life for a child with a severe disability”. They insisted that there was no scientific evidence to support the claims of Dr. Rader and Medra Inc.
I asked if they had a great deal of knowledge in regards to his treatment and the answer was this, “No. It can’t possibly work, you are wasting you money”. What price would be acceptable for my daughter’s health and happiness? Hannah was still having multiple daily seizures, at times more than we could count. There was nothing more our doctors could offer. We scheduled her treatment for June 30, 2007.
To our astonishment, within 20 minutes following the treatment, Hannah began to roll her head from side to side, and started to cry. As parents, we learn to recognize the different meanings behind different cries. She was scared. She didn’t seem to recognize myself or my husband; she was pulling away from us and looking around the room as if she was totally lost. I was terrified. My husband took her in his arms and said, “Hannah is okay. You are okay. Daddy and Mommy are here”. She looked at him and said, “DADDY WHY DID YOU WAKE ME UP? We were completely shocked. My husband and I started to cry and he asked her, “Where have you been?” and she replied, “I don’t know”.
Following the treatment, we took her back to our hotel room and waited for the inevitable daily seizures to strike. No seizures occurred. She had a nap and then independently got out of her bed and started walking toward the bathroom. We scrambled after her because she was not wearing her helmet and we feared the impending drop seizure. When we asked her where she was going, she looked at us and responded with ATTITUDE....”I’m going to the bathroom”. Hannah had not had control of her bowels or bladder for over 10 months, and suddenly she was going to the bathroom independently.
After arriving home, Hannah went for 45 days SEIZURE-FREE. Our Doctors at home were concerned that she was still having regular seizures and that we were just not visualizing them. Hannah was scheduled for a 24 hour EEG in September and the EEG had dramatically improved, and while still irritable, she had no discernible seizure activity in 24 hours.
We went for a second treatment in December 2007 and Hannah continued to experience amazing results. She was reassessed by medical professionals and was found to be cognitively age appropriate, gross motor skills had improved significantly to only a mild delay, and her speech was accelerated to the 97th percentile!
Today, Hannah suffers from about 3-4 tonic seizures per month during sleep. She no longer has awake seizures. Hannah is attending a regular public school in Kindergarten and is doing very well. She rides a bike, she drives go-carts, she swims, sings, runs, jumps...everything that any 5 year old could and should be doing. Her quality of life has improved 100%. OUR DAUGHTER IS BACK!
It is evident that fetal stem cell therapy changed the course of her disease and gave her back her quality of life and health almost immediately. Inexplicably her doctors still dismiss stem cell therapy as the cause for her dramatic improvement. However at least they do admit that they know nothing, about it.
“Refusal to believe until proof is given is a rational position; denial of all outside of our own limited experience is absurd” Annie Besant
The irony of the situation is that we were expected to accept the prognosis for our daughter, as described by the neurologists, based on their scientific, medically approved testing. EEG’s and standardized developmental testing led to the diagnosis. She is a normal child again and the same scientific, medically approved testing that they perform to assess her, supports this. The testing procedure did not change. My child’s condition changed. It is utterly ironic that the same tests that diagnosed her and gave us no hope for recovery, are now being dismissed when they show that her condition, as I outlined earlier, has dramatically and irrefutably improved.
One day soon, the world will accept what we know to be true. Dr. Rader is a pioneer in the field of stem cell therapy and his work will serve as the basis for stem cell curative medicine in our society.
People argue that the clinical evidence is lacking in his research, and that it is providing merely anecdotal evidence. My daughter’s EEG is normalizing. This is something that we were told would never occur. We have copies of every EEG report that our daughter has had, and would be happy to share this with anyone who needs clinical proof. She was assessed by trained medical professionals in the area of speech, cognitive function, gross motor skills, fine motor skills, and behavior before the first stem cell treatment, between the first and second treatment, and after the second treatment. She has improved to an age-appropriate level in all areas with the exception of fine motor control. We are confident that with further treatments that this too will improve. This is not a “Mom’s interpretation” this is clinical proof that stem cell therapy is effective. We went to the ends of the earth and back to find something to help our daughter. We found Dr. Rader and we will be forever grateful for the gift that he has given our family and our daughter. She is a normal child, full of life, love and mischief.
OUR DAUGHTER IS LIVING HER LIFE AGAIN!
For more information about Stem Cell Therapy and to see other personal stories including Hannah's video with her family, please go to www.medra.com
Presented by Tracey Alderson, Administrator, Epilepsy Awareness 2009