Ariella's Story . . .as shared by her mother, Raquel ~ June, 2015
Everything was going perfect we planned the pregnancy so I knew from the start. It was a very happy and healthy pregnancy, birth, everything. Birth was natural with no epidural. Four pushes she was out, and perfectly healthy.
She was simply a very happy baby always smiling never sick. She was rolling over, trying to sit up on her own a little. Doing everything a 4 month old should be doing. Her Pediatrician even made a comment that she was above average on her motor skills.
Then she got her 4 month vaccines.
(07/08/2014)
3 shots including 6 vaccines;
DTaP, Hib, IPV, Rotavirus, PCV, Hep B
I could feel God tugging at me to decline them. I did. I told the nurse no. She assured me my baby was fine and would remain fine. She told me DCF could be called if any one finds out my baby isn't vaccinated, that it is medical neglect. I was so scared so I turned my back on my baby. I just looked the other way and said "fine" and she got her shots as she sat in her daddies lap. I knew in that moment I had failed her. I felt it in my gut, but I ignored it.
Within the hour our baby girl completely changed.
**She started having seizures and/or spasms.
**Screaming a horrible high pitched scream.
**She no longer smiles, coos or laughs. **Can no longer hold her head up, or sit up on her own.
**No longer rolling over.
**No longer interested in toys.
**clenching of the fists
Gradually she got worse.
**She started arching her back horribly, and trying to push her head back all the time almost touching her bottom.
**Eyes go back into her head after seconds of focusing on something, especially after a seizure or spasm.
**At times she is hypersensitive and has a spasm by just a soft rub on the face by our hands or kiss on the cheek, but not always.
**stiffness in joints, especially arms and neck.
As You can imagine we were very concerned I knew something was terribly wrong. Our worse fear had come true. I called the doctors they said it is perfectly normal. They told me to give her Tylenol.
I took her to see her Pediatrician for her 5 month check up who said I was overprotective and that she is just teething and gassy and below average on motor skills. But wait just a month ago she was above average, that doesn't make sense. Anyways I kept asking questions regarding vaccines or anything else just knowing gas and teething isn't the cause. However he was reluctant to answer and instead said he would call me if he or any other parents had questions since I know everything.
Her 6 month appointment she was seen by a different Pediatrician. We explained all the same symptoms and concerns. She immediately picked our daughter up and checked her out feeling her head. She then immediately referred Ariella to Joe DiMaggio Children's Hospital. Explaining that the fontanelle (soft spot on the top of her head) had completely closed prematurely.
We immediately rushed her there. They ran a cat scan to determine the cause of the fontanelle closing. Finding that the brain had stopped growing at 4 months of age, decreased in size alittle, and she has a few cysts on her brain.
So they admitted her and the tests began.
**urine tests
** countless blood tests
**spinal tap
**MRI
After 3 long days of constant testing they sent her home. Only to return 2 days later for an appointment for more tests.
**more blood
**EEG
**hearing test
She was simply a very happy baby always smiling never sick. She was rolling over, trying to sit up on her own a little. Doing everything a 4 month old should be doing. Her Pediatrician even made a comment that she was above average on her motor skills.
Then she got her 4 month vaccines.
(07/08/2014)
3 shots including 6 vaccines;
DTaP, Hib, IPV, Rotavirus, PCV, Hep B
I could feel God tugging at me to decline them. I did. I told the nurse no. She assured me my baby was fine and would remain fine. She told me DCF could be called if any one finds out my baby isn't vaccinated, that it is medical neglect. I was so scared so I turned my back on my baby. I just looked the other way and said "fine" and she got her shots as she sat in her daddies lap. I knew in that moment I had failed her. I felt it in my gut, but I ignored it.
Within the hour our baby girl completely changed.
**She started having seizures and/or spasms.
**Screaming a horrible high pitched scream.
**She no longer smiles, coos or laughs. **Can no longer hold her head up, or sit up on her own.
**No longer rolling over.
**No longer interested in toys.
**clenching of the fists
Gradually she got worse.
**She started arching her back horribly, and trying to push her head back all the time almost touching her bottom.
**Eyes go back into her head after seconds of focusing on something, especially after a seizure or spasm.
**At times she is hypersensitive and has a spasm by just a soft rub on the face by our hands or kiss on the cheek, but not always.
**stiffness in joints, especially arms and neck.
As You can imagine we were very concerned I knew something was terribly wrong. Our worse fear had come true. I called the doctors they said it is perfectly normal. They told me to give her Tylenol.
I took her to see her Pediatrician for her 5 month check up who said I was overprotective and that she is just teething and gassy and below average on motor skills. But wait just a month ago she was above average, that doesn't make sense. Anyways I kept asking questions regarding vaccines or anything else just knowing gas and teething isn't the cause. However he was reluctant to answer and instead said he would call me if he or any other parents had questions since I know everything.
Her 6 month appointment she was seen by a different Pediatrician. We explained all the same symptoms and concerns. She immediately picked our daughter up and checked her out feeling her head. She then immediately referred Ariella to Joe DiMaggio Children's Hospital. Explaining that the fontanelle (soft spot on the top of her head) had completely closed prematurely.
We immediately rushed her there. They ran a cat scan to determine the cause of the fontanelle closing. Finding that the brain had stopped growing at 4 months of age, decreased in size alittle, and she has a few cysts on her brain.
So they admitted her and the tests began.
**urine tests
** countless blood tests
**spinal tap
**MRI
After 3 long days of constant testing they sent her home. Only to return 2 days later for an appointment for more tests.
**more blood
**EEG
**hearing test
The next 3 weeks all we could do is pray and hope for the best, as we waited for the results. Finally they came but it wasn't good. Her galactocerebrosidase was low. Indicating it could possibly be Krabbe disease, or another disease similar.
Now Krabbe disease is 100% genetic. Meaning both parents have to carry the gene. As well as every one else in both of our families. It is so rare the doctors that worked her case will never see it in their life again. They said they needed to do a DNA test to confirm it. However we had to pay out of pocket. We went down to the lab payed right then and there and got the test done.
Now Krabbe disease is 100% genetic. Meaning both parents have to carry the gene. As well as every one else in both of our families. It is so rare the doctors that worked her case will never see it in their life again. They said they needed to do a DNA test to confirm it. However we had to pay out of pocket. We went down to the lab payed right then and there and got the test done.
In the meantime they are already convinced she has it and will pass soon. Advising us to enjoy our last few days with her and to make her comfortable. They then prescribed her gabapentin and clonidine. Claiming they are both all natural, no side effects, and I couldn't overdose her if I tried. I researched them. Finding out -
**of course they are not natural.
**there are serious side effects including death for both.
**they proscribed her twice the amount of gabapentin my grandfather who is an amputee is proscribed.
**clonidine is not for children under the age of 3.
**gabapentin is not for children under 12.
**both slow the heart rate.
**these two mixed eventually would have stopped her heart.
**of course they are not natural.
**there are serious side effects including death for both.
**they proscribed her twice the amount of gabapentin my grandfather who is an amputee is proscribed.
**clonidine is not for children under the age of 3.
**gabapentin is not for children under 12.
**both slow the heart rate.
**these two mixed eventually would have stopped her heart.
So the test results from the "DNA test" came back and turns out it wasn't the DNA test they did. It was the same test he was holding the results from when he ordered the DNA test, the test that confirmed her galactocerebrosidase was low. They did the test twice. And now claim they can't do a DNA test on her, or us. Only the fetus if I get pregnant again.
They refuse to give us answers as to why they can't do the test now. They change the subject as quickly as possible when I say it happened within an hour of her shots. They claim there is no link to autism and vaccines. I am not questioning that link tho. My child is not autistic. My child's brain completely stopped growing, my child stopped development and lost all development she had. My child's brain shrank. And they wouldn't help me save her. They gave up on her. They tried killing her, tried stopping her heart.
They refuse to give us answers as to why they can't do the test now. They change the subject as quickly as possible when I say it happened within an hour of her shots. They claim there is no link to autism and vaccines. I am not questioning that link tho. My child is not autistic. My child's brain completely stopped growing, my child stopped development and lost all development she had. My child's brain shrank. And they wouldn't help me save her. They gave up on her. They tried killing her, tried stopping her heart.
They also tried putting her on hospice. After explaining to both the referring doctor and the nurse that called that we are not in the least bit interested, that we refuse to give up. They still randomly showed up and after yet again explaining we don't need the service they almost immediately started explaining the sedation process and started getting out the sedation tools, mean while my child was already sleeping. I continued to refuse it. Explaining this all started with the vaccines. Then all she cared about was rather we spoke to any attorneys. Asking us 5 times within 15 minutes in different ways. As we answered the same way each time, Stating we are only searching for doctors.
I have now discontinued going back to see them. They refuse to address the fact the vaccines caused this and We refuse to watch her die.
I have now discontinued going back to see them. They refuse to address the fact the vaccines caused this and We refuse to watch her die.
From research and speaking with other doctors I have found that the vaccines could cause low levels of galactocerebrosidase also. So that answers that question. I am working on getting a DNA test to role out Krabbe. I have however gotten a DNA test done showing what meds she can and cannot have based on her DNA make up.
We have changed her diet to all organic home made baby food, a goats milk recipe referred by the doctor with added colostrum, extra virgin olive oil, unrefined coconut oil, flax seed oil, dha, black molasses, a greens mix powder, and three different mixes of herbs for brain and nervous system healing and repair, and in her morning bottle I add her probiotics and daily vitamins. We also made her a tea from fresh organic turmeric, black pepper, ginger, garlic, cilantro and whole lemon. She drank an ounce of that each day for three weeks. I did detox baths everyday for awhile but now only do it maybe once a week; epsom salt, bentonit clay, and baking soda baths. Gently brushing her body towards the heart with a soft bristle brush before each bath. I use pure organic unrefined Coconut oil for diaper cream, and add equal part extra virgin olive oil for lotion and chapped lips.
We have changed her diet to all organic home made baby food, a goats milk recipe referred by the doctor with added colostrum, extra virgin olive oil, unrefined coconut oil, flax seed oil, dha, black molasses, a greens mix powder, and three different mixes of herbs for brain and nervous system healing and repair, and in her morning bottle I add her probiotics and daily vitamins. We also made her a tea from fresh organic turmeric, black pepper, ginger, garlic, cilantro and whole lemon. She drank an ounce of that each day for three weeks. I did detox baths everyday for awhile but now only do it maybe once a week; epsom salt, bentonit clay, and baking soda baths. Gently brushing her body towards the heart with a soft bristle brush before each bath. I use pure organic unrefined Coconut oil for diaper cream, and add equal part extra virgin olive oil for lotion and chapped lips.
Ariella passed away on August 24, 2016
Read, "Farewell Sweet Ariella . . . "
Read, "Farewell Sweet Ariella . . . "