Welcome to our website

First of all, to any researcher that might stumble across this....I don't want to hear about how there isn't enough funding to study this disorder- You tell me what it will take....I don't care if it's billions.....There's a lot of people who love this little girl and I know would help with raising funds all over the world- asap. However, I do not want to see it go to waste, so if you are a researcher- Feel free to tell me what it would cost to get a mouse model of this disease. My daughter only has 2 mutations so I'm sure it would not be as "complex" per say as a child with several mutations. You can email your "estimate" and contact info to: starstuddeduniverse@yahoo.com

Our most recent news stories are at the links below:

http://www.wfaa.com/news/health/The-final-journey-for-a-four-year-old-with-a-rare-disease-82127667.html http://cbs11tv.com/video/?id=50784@ktvt.dayport.com

http://cbs11tv.com/video/?id=50784@ktvt.dayport.com

http://www.wfaa.com/news/health/Rare-disease-strikes-twice-in-Erath-County-family-83004062.html

 

 

 

I want to give hope not just for my child, but any child out there battling with this horrible diagnosis. There is no time to waste!

 

 

 

 

(Please read this page and then proceed to updates in the NEWS tab, Mikayla is currently back in PICU again since writing this) We have also added photos to the photogallery.

 

Don't forget to sign our guestbook!!!!!!!!!!!!!!

Thank you for taking the time to read about our beautiful little girl Mikayla. After spending one month in Cook's Children's Hospital in Ft.Worth, Tx...Mikayla was diagnosed on November 6, 2009 with Alpers Disease. It is a non-curable, non-treatable fatal illness that doctors say will eventually claim her life. (Most children have not made it past their first 10 years.)

 

Mikayla is 4 1/2 years old, and today you would not know anything was wrong unless you looked closely to see that her left leg constantly twitches and her speech is somewhat unclear due to having auditory neuropathy. (which we now know is more than likely because of the Alpers.) She is not deaf, it just means she hears with what is similar to mild static in a radio.

She is such a sweet beautiful little girl, and I'm still trying to understand God's intent. I struggle with the diagnosis daily, but just trust in knowing that he is the Alpha and the Omega and through faith, anything is possible. EVEN when it comes to DNA. ; )

Since this is a Mitochondrial disorder (*with this condition,2 genes passed recessively from my husband and I-we assume)they say there is nothing that can be done. I disagree, while I respect their medical opinion. The key to my research has been not in finding a cure, but in finding a way to slow or stop the progression of the disease.

There have been many strides made in slowing the progression of many mitochondrial disorders, which all have a similar problem...The body loses it's ability to provide enough oxygen/energy to vital organs such as the liver, heart, brain. It also causes the body to produce too many free radicals, which in turn puts too many toxins through the liver, and can damage it over time.

They say that she will lose her vision, her hearing, her ability to walk, and will eventually lose her mental capabilities.

Right now- she's a happy normal little girl and I want to keep it that way!

I am not in denial about my daughters diagnosis. I am, however intelligent enough to do my own research and find that there are trials, and treatments for VERY similar mitochondrial disorders. Alpers is so rare, that it has not been studied closely enough to know if something could help. We want to change that!!!!!!!!

We do not want to be a victim of this disease. In my heart, I feel we were handed this in order to make a change in what they say is hopeless. We will take what we have been handed and we will see that her diagnosis and her life is not without every attempt to find something that works. So many children have mitochondrial disorders!!!

If Mikayla can be the newest biggest advocate for Mitochondrial disorders-and be an example while she is here, then science will see- and listen -and possibly find something to slow or stop the progression of these diseases all together. Alpers is one of the worst forms there is, because it is not treatable.

If we find a way - look at all of the people with diseases that stem from degenerative disorders- who might be able to significantly slow, or stop the progression, and possibly recover!

I may be one just another mother, but I see my baby over there laying with her arm around her little sister sleeping and I'll tell you- we aren't going down without a fight!!!!

Alpers affects 1 in 200,000 children. But once they have this genetic disorder, siblings have a 25% chance of also having the disease. Mikayla also has 2 younger sisters. Morgan, who just turned 3 and Madison who just turned 1in October of 09. 

Morgan, the second youngest, was also diagnosed with auditory neuropathy a year ago. Now that we know she has a similar "neuropathy" we are very scared for her. Madison, has not yet shown any signs of a hearing disorder and is picking up on words quickly- However- so did the other two girls at that age. They did not have speech regression etc. until right after their one year shots. 

We are not blaming the shots, however, we do think that it is an odd coincidence that they both lost their ability to say words and verbalize things right after. Mikayla also had her 4 year shots on September 2nd, and  on September 29th we were Careflighting her for what ended up being her first Grand Mal  status epilepticus seizure. She seized for over 4 hours, and is lucky to be alive. If we had lived closer to Cook's we could have rushed her there immediately, but we are only near a county hospital which is 80 miles from the nearest pediatric type care facility.

I will tell more about her story on other pages of this website.

Though the metabolic geneticist does not really advocate for natural medicines because they do not know  their effectiveness (or have not seen their effectiveness) she did not think that putting Mikayla on a bunch of vitamins etc. would help. HOWEVER- She did agree and let us put her on something called CoEnzymeQ10 (*look it up, you'll be amazed at it's ability to do things!) and her neurologist had put her on something called Levocarnitine.  As most of you know, if it's not a medically deemed medicine, unsurance does not cover it. We were lucky enough that the Levocarnitine was covered but everything else is not.

I do think though, if you're doctor is willing to prescribe an enzyme that means they have seen something work. My thoughts are, that they cannot be held medically responsible for the outcomes if they prescribe something that is not a fix all. (*I know, money and pharmacies it's all a conspiracy- but I do think in her case, she just does not want to give false hope for something that she can't say will work.)

So, we are doing our own vitamin "cocktail" research into what has and hasn't worked for ATP (*energy producing) disorders. We did put Mikayla on several vitamins, including a multi-vitamin, immune booster, the Omega 3's, B vitamins and the enzymes. She also takes a seizure medicine called Keppra  2 times a day , and another seizure medicine to help prevent grand mal seizures 3 x's a day. As some of you know, this is not cheap. Just her 1 seizure medicine is $300 for a one month bottle. Thank goodness it is covered!

Mikayla has come home, and surprised a doctor or two... She's up walking, playing, sliding etc.

We know that there are trials out there that we are going to qualify for, SOMEWHERE.

Someone will look at Alpers and realize that with the right balance or chemical, we can eradicate it's ability to spread.

We also know that natural medicine works. When you have a problem in your body, most diseases rob your body of things you need. Depending on the disease, each "thing" is different, if you find something to replace it, then you can fight back, and possibly either slow it, or STOP IT.

We also know that there are things like blood dialysis, gene replacement therapy, and other treatments done all over the world for oxidation problems, and mitochondrial disorders. Yes, there have been set backs and bigger implications of these therapies-but it shows promise.I hope that having this website up will help researchers stumble across us and think "wait a second-here's a little girl that's still in somewhat good health-since we know what the disease can do- let's do a trial on her and if she's healthy in the years to come- IT'S WORKING!!!!

Not only that-if either of the other two girls (*heaven forbid) have this disorder, science is at an advantage for being able to double or triple their testimony of the effectiveness of medicines or trials that they believe in!

We have already prepared ourselves and are ready for whatever. I have bags packed in the closet and ready if someone says come to Zimbabwe we have potential treatment. If that's where it is- then that is where we're going!

We will make sure someone isn't trying to use her for profit, but we will not turn down anything that shows within safety limits an ability to halt her disorder.

Alpers has actually only been a "known" disorder for 15 years. Someone found common mutations in a DNA region called POLG1, and we now know how to test for it- just not how to treat it.

I am asking you all to take a second and look at your children. Think about them running and playing and going to school, think about the days you spend just loving them....and think about what you would do if you had a doctor tell you they are going to die and there is nothing you can do about it.

We have spent lots of time in and out of Cook's. First she went in and was diagnosed with Occipital lobe epilepsy, and went home on seizure meds. Then the grand mal seizure in September where she came down with ecoli and staph and later H1N1. She fought it all off- Such a strong little girl!!!!!!!!!!!

This site is dedicated not only to my daughter,Mikayla, but a little 16 month old girl named Hailey who passed away at 16 months from Alpers Disease. You can view more about her story, and her battle with Alpers at www.haileyswish.org

I want to say thank you to Dr.Perry, Mikayla's neurologist at Cook's Children's Hospital. If not for him, we still would not have a diagnosis. He tested for this disorder and nailed it. Had we not found out, Mikayla could have been treated for seizures with Valporic Aic aka:Depakote and and possibly went into liver failure and died.  He took a leap of faith....Thank you again Dr.Perry, because of you we are able to cherish every moment with our child and make her life EXTRA special while she is with us. I know that Alpers is more prevalent, but not genetically tested for and children die of liver failure or organ failure, while parents are left baffled, not knowing what happened. I firmly believe Alpers has been missed in MANY cases of children with seizure disorders throughout the world. Thank God for a neurologist who did all he could, until he got an answer.

Lastly, if you are a researcher, pharmaceutical company-anything or anyone that thinks you know of a study or trial- ANYTHING- Please contact us! I check this site often! Or you can reach me directly at allamericancosmogirl@yahoo.com or by phone at 254.413.2559

AND YES, I am open to anyone who wants to talk about this disorder, symptoms, or stories of miracles. Anything. I want my daughter to reach as many people as she can!

 

Thank you so much for reading-NOW LETS GET BUSY AND DO SOME RESEARCH!!!!!!!!

 

 

 

 

 

 


News

Morgans Progress on the EPI-743 Trial (April 19, 2013)

04/19/2013 03:44
 I've been horrible lately about keeping up with posts for the Alpers website and while this won't be the longest blog, for anyone checking the site I wanted you all to know that Morgan is still on the ONE and ONLY trial medication for mitochondrial disease. It's also known to help treat...

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Keeping a promise: Finally a medication to treat Alpers, EPI-743

03/04/2012 23:36
It has been a while since I have posted and I think we are long overdue! Great things have happened in the midst of our sorrow from losing Mikayla. Morgan, Mikayla's younger sister was diagnosed with Alpers as well and began having symptoms only three months after Mikayla passed away. I...

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Alpers took her life, but we're still fighting!!!! I promised her!!!!

03/27/2010 09:46
 Saturday, March 20th, 2010 Our beautiful 5 year old little girl passed away. Does it surprise anyone? No, she had a mitochondrial disease. This is what people with mito kids end up having to do, if they aren't the lucky ones who get to fight daily to balance their fragile health.  I will...

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AMAZING NEWS!!!!!!!

03/12/2010 11:45
 The past two days have been chaotic let me tell you. We've been without a nurse for 3 days, John is still sick, the kids are .....well 3 and 16 mos. need I say more?! I love them, and feel guilty that I cannot do more than pop lunch in the microwave and toss in a movie because the agency...

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Keep Moving Forward

02/24/2010 02:36
 I wish when my child got sick I didn't have to hear "she has Alpers, you know what the outcome is regardless." Or "she is sick, but she has Alpers." UGH! So frustrating. YES I know our child is diagnosed with a terminal illness....thanks for stating the obvious, but quit attributing her...

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Mikayla is back in Cook's

02/20/2010 20:18
I sit here looking across at Mikayla, once again in a hospital bed. We came back to Cook's yesterday after multiple complications at home. When Mikayla went home back in January, exactly one month ago today, we didn't even know if she would survive the transport home. However God looked over her...

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Happy 5th Birthday

02/08/2010 04:26
Remembering the poem I wrote about you,   What a sunny pretty day, to be so sad. When the flowers bloomed, and the world seemed glad. I sat looking out the window from room 128, Hearing, “we couldn’t save your baby, I’m sorry It’s too late. “ I could have watered all the flowers on...

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She's getting better everyday!

02/02/2010 02:07
Mikayla has been off her oxygen for almost a week now and is maintaining at about 92-100 percent and her heart rate has gone down to about 110-130! (*That part of the update is for you dr. perry! lol-That heart rate and oxygen was driving me nuts!) she's turning her neck a little,and even held...

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From the bottom of our hearts....

01/24/2010 21:12
      A lot has gone on since we brought Mikayla home. But God made sure she made it safe and sound....She slept all the way from Cook's to the house which was an hour and a half drive. We love all of the people at Cook's and miss them very much, but we are so much more...

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Such a beautiful little fighter...

01/16/2010 20:51
  I know you all have been wondering what is going on with Mikayla, We've gotten a lot of emails on my facebook (*thank you for checking on her), so to save time, I am just going to respond here.  For those of you who might not know....Whichever side of your body shows symptoms of...

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