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The Beerys Dystonia Journal

We hope that this journal will help others better understand one family's journey with Dystonia.

Sunday, February 05, 2012
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16

Hello everyone,

Thank you so much for your prayers today, we truly felt them in a HUGE way!  Please forgive me if I don't respond to all of the emails, but I'm definitely reading every single one and know that your prayers are being used in amazing ways!!

ABC's local affiliate, 10 KGTV, came over today and did a piece which will air at 5:45 tonight (I'm thinking this is just local to San Diego).  Good Morning America just left and they will air their piece tomorrow morning (between 7 and 9 am).  They are each editing their pieces down and we know that what ever comes out, God will use in ways we may never even think of!!  Again, please pray that whomever needs to see this story would turn on their televisions, tonight or tomorrow, and be drawn to whatever it is God has for each one of them.  Pray that God will move mountains, as He has already done, through each story that is shared. 

I have to share with you an interesting thing that happened today.  As the first crew was leaving, the GMA crew was arriving.  We all introduced ourselves and I went over to get caught up on my emails.  The sound man was standing by me, setting up, so he said a few nice things to me about our kids. 

I asked him if he had children and he told me he had kids and grandkids.  I asked how many kids.  He told me how many and that he had twins, but one died from Cerebral Palsy.  I was a little distracted at the time and when I heard his words, I stopped everything that I was doing and looked at him. 

I asked him to please repeat what he just said.  He told me, once again, that he had a set of boy/girl twins and his son, who was diagnosed with Cerebral Palsy, recently died from his Cerebral Palsy (his daughter is now 22). I asked him if he had any idea what the story was about that he was here, at our house, to cover.  He looked at me and said "no." 

I then told him about Noah and Alexis being diagnosed with Cerebral Palsy and a bit of their story, but we were all called to do other things while I was sharing, so I had to stop.  I told him we would talk more later.

Because of the short notice of the interview, GMA had us do a "telephone" interview where the reporter was in New York on the phone asking us questions while they were filming us at the house.  In the meantime, Don, the sound man, was sitting on our couch and we were suppose to look at him like he was the reporter asking the questions.  As I was sharing the story, looking at Don as if he was the reporter, I noticed a tear in his eye. I could feel that God was moving in his heart as I could see the emotions on his face. 

As the reporter asked us more questions, over the speaker, and as I looked at Don to give answers, I felt God showing me this is why we are here, for Don, for other families with kids that have been afflicted with debilitating disorders, for families that have lost loved ones to disease, sickness, affliction......this is why we are here, at this very moment in time.....this is why we are here!  God intended so much more for His story in our lives than just to help Noah and Alexis through this disorder and to give them new lives, He has more plans than to just reach people who have been misdiagnosed or are undiagnosed, God's plans for His story are so much greater than anything we could begin to imagine.  We only see such a small part of what He's doing, a little glimpse into the magnitude of it all. 

God is reaching into the hearts of people who have lost loved ones to disease so that He can bring new hope into their lives, God is reaching into the hearts of those afflicted with debilitating disorders to bring new Hope, new Life, and light into darkness. 

As I looked into Don's face, I saw the Hope he had for other children and the love he had for his son.  It's our prayer that this new chapter in our lives is the beginning of a new chapter in many lives.  That personalized medicine will become a reality for the future generations, that everyone will be able to have proper diagnosis through tools like sequencing, that there will no longer be years of pain and suffering through test after test, only to end up with no solid evidence of what's going on or no diagnosis. 

God's plans are so much bigger than our plans, so our prayer is that God would continue to break down barriers and walls and He would bring about change and new hope into a world filled with heart ache, suffering and such a lack of hope.  Thank you for joining us in prayer for so many, thank you for joining us as we pray for Don, that God would work in his heart tonight and reveal Himself to Don in an amazing way.  God is good, God is purposeful, God is in control. 

By the way, after we were all done with the filming and they were breaking down, Jeff, the man in charge of filming the segment told me that his wife is his sound person, she always does all the sound for the pieces he does.  He then told me that she had an opportunity to go on a trip for a week, so she was unable to make it......God sent Don instead.  Purposeful and in Control, God is Good!!

Love and prayers,

Retta

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16
The Associated Press, Los Angeles Times and Healthday stories have posted on more than 170 outlets nationwide including top tier outlets like US News & World Report as well as Forbes and other significant regional newspapers and broadcast outlets throughout the country. 

Here is a sample of some of the publications:

Albany Times Union Atlanta Journal Constitution Charlotte Observer
CNBC.com Contra Costa Times Deseret News
Forbes Huffington Post Kansas City Star
KTVU San Francisco Laramie Boomerang Las Vegas Sun
Miami Herald Minneapolis Star Tribune Modesto Bee
Monterey County Herald MSN Health and Fitness Blog Newsday
Newser NPR Press-Enterprise
Reuters Reuters Alertnet Sacramento Bee
San Antonio Express San Francisco Chronicle San Jose Mercury News
Seattle Post Intelligencer SignOnSanDiego.com Stamford Advocate
Sun Herald The Seattle Times Times Union
Times-Standard Ventura County Star Washington Post
Washington Times

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14
Below are 6 of the links for articles that have just been published on the paper that was published today in the Science Translational Medicine journal.  
There are more articles that continue to pour into my email box that are being published as I'm typing.  I just got off the phone with Reuters and the Associated Press doing more interviews.

God is moving in mighty ways and we would greatly appreciate continued prayer for wisdom and discernment with every conversation and every article.  Fox News and News channel 10 wanted to come over today to do a special but I told them Noah and Alexis had their 8th grade trip to Disneyland.  I asked if we could reschedule for Thursday and haven't heard back.  It sounds like there are many more requests coming in and we are trying to take one step at a time and honor this last week of Noah and Alexis's 8th grade and their graduation.  It's exciting, it's overwhelming, it's SO GOD!!!  

Thank you for your continued prayers for our family!!  I was feeling sick yesterday, lots of allergy problems, "cloudy head" so to speak, itchy eyes, crazy stomach.....just really not doing well.  I could feel all the prayers and today I'm feeling 100% better.  We greatly appreciate every prayer said on our behalf as I know there will be more things come up that we'll need our full health and energy levels up to be able to finish this race strong.  We also want to continue to pray that this opportunity will open the doors for FDA approval for sequencing for everyone, for open doors for health insurance to cover costs and for all those people that have been misdiagnosed will have new life through these findings.

Thank you, thank you, thank you for your love, prayers, encouragement and support.  We are blessed beyond understanding!!

Love 

Retta

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13

Hello everyone,

I hope you are all doing well!!  I stand in complete amazement as the flood gates of heaven are being opened and blessings are being poured out as God continues to move mountains in our lives!!  First of all, thank you so much for your prayers for the medical paper to be published. 

Baylor College of Medicine, the team of scientists and doctors we have been working with, submitted it to another medical journal, had some renditions, and it is being published on Wednesday of this week!  Praise God for amazing answered prayers!!  Thank you for your hearts to pray for specific requests on our behalf and so many other's!  I have been on many conference calls since my last email with the team at Baylor and the team at Life Tech.  There is an excitement that is beyond our world in everyone and I know God is moving in mighty ways. 

We need lots of prayer for the coming weeks, that God would give us all that we need to speak clearly and effectively, that He would guide us, guide our thoughts and our time/schedules, and would anoint each one of us.  I'm praying that God would speak through us and we would get out of the way so that He can do just that.

I had an interview with Baylor College of Medicine last week as they will be sending out a press release tomorrow or Wednesday.  I had an interview on Friday (while driving to the airport with Alexis for a mother/daughter weekend) with the Houston Chronicle.  They will be sending over a photographer tomorrow to take a picture to go with the article.  ABC News wants to do a special on our family's journey, the New York times and the Wall Street Journal have reached out to possibly do some pieces, and we are still waiting for a date for the Today show to meet the family from Lake Elsinore.  This, in and of itself, is clearly God moving in MIGHTY ways!!!  You have joined us in praying, for the past 6 years, to get more into the medical field.  Our timing is not perfect, but God's is always perfect!!  

Noah and Alexis's neurologist, Dr. Friedman, spoke at a conference in Toronto last week.  She shared Noah and Alexis's story, their medical journey.  That was the ONLY reason she went. 

Here's a part of an email she sent me this weekend:

"Just quick note to say presentation went well. The presentation was called the Video Olympics and was in front of 1500 people from all over the world.   What I didn't realize was that the whole thing was a friendly competition of sorts.  There were 16 cases presented by people representing countries from around the world.   There was a bronze, silver and gold medal awarded at the end and your kids cases won the gold.  There was a big fuss made over the awards, and though I generally don't like that kind of notoriety, the great thing was that evening and throughout the next day (today) , I had many people come up to me from all over and ask many questions regarding the diagnosis and how to evaluate and/or treat their own patients.  I do think this was a great way to increase awareness and in that way was a great success.  I am hopeful that  this will make the difference for at least one other child."

I know this is only the beginning as God continues to make it clear the plans that He has for His story in our lives.  He is moving hearts during interviews and conference calls.  As I spoke with the woman who wrote the press release on Friday, she shared how much this story affected her in a very personal way.  She told me she put her heart into the press release and many of her colleagues are telling her that her writing was completely different in this piece than any other's they had read in the past.  They didn't recognize her as the author because it read like a story and had so much heart put into it.  Science journals, press releases....God's glory is shining through in every area.  Thank you for your continued prayers as I know He has so much more planned and so many hearts to reach.  

We are praising God and thanking Him for He has surely thrown open the floodgates of heaven as He continues to bless this journey.  We are thanking God for each one of you and your hearts to pray for our family and so many others that we may never even know about in this life. 

Thank you, thank you, thank you from the entire Beery clan.  We are truly blessed!

Love and prayers,

Retta

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