Join us for the Walk with Angels

We would LOVE you on our team! Team Asia raising awareness for 2q23.1 Microdeletion/Duplication Syndrome. We have signed up for the annual Walk with Angels-organized by the United Angels Foundation. May 31st in Lehi Utah beginning at 9:30 am. More info here or if you have an Angel sign up! https://www.unitedangelsfoundation.org/walkwithangels/index.html This is a great organization doing so much for the special needs community-we are happy to participate in this activity!

The United Angels Foundation is proud to announce the Walk With Angels. This event provides an opportunity for family, friends, and members of the community to show their support for parents that have children with special needs. We encourage you to join a team and attend this wonderful event. With your support, we can reach out to more families and provide them with assistance, resources, and the opportunity to connect with our wonderful members. We use the funds raised from this event for parent educational seminars, youth and family activities (including Freedom at the Pool, Hee Haws, and our annual Christmas party, as well as age-related activities), and to administer our newborn and new member program. Please join us in advocating for all the angels in our community!

So... Asia has a chance to win a desperately needed new iPad:) It will take a lot of donations to her team but nothing is impossible! Go Asia:)

Link for Team Asia!

http://www.walkwithangels.info/view_team.php?team_id=271

Just a update

Gah! I haven't posted on here for awhile! I have been so busy and I do have a few things to report. I am sure I am missing some things but first thing is-I had to buy Asia new clothes and shoes because she has grown! I think she has had the same shoes for 2 years, and I went from her size 5 clothes to 6-8. This sounds weird but, for a child you usually buy new clothes and shoes all of the time because of growth, Asia hasn't been like that-she's a munchkin. Right now she is doing so well. Since we weaned her from one of her anti-seizure medications Topamax, she has gained 5 pounds-yay!!!! Seriously this is so exciting. The girl has weighed the same for years I swear, she is also growing taller. It is great that she is eating a lot more and looks so much healthier. She is also speaking so many new words! She is calmer and more focused. They are even seeing it at school! It only gives us that much more of a desire to take her off of her last medication Depakote-to see her full potential. If she reverts to having a lot of seizures at that point we will try CBD oil before giving her anything else. This also makes me a little worried, I am hoping she is more advanced at her full potential but, she may not be.  I have to remember not to expect to much.

Asia turned 8 years old this month!! She LOVES her birthday and we took her to one of her favorite places for a birthday party with all of her cousins-to ride the carousel. She was so into it this year-really fun to see. I'll be taking new pictures of her in the next month or so, it seems like I just did this:)

I don't want to forget to mention on here that it is Autism Awareness Month (1 in 68 people) . Autism affects so many friends & family and Asia is ASD (autistic spectrum disorder). Spread the awareness!!

http://www.autismspeaks.org/

We are currently on spring break and she def needs to go to school. Everyday she asks for the "bus" and she is getting cabin fever! We go out but, when inside she completely destroys the house and melts down a little, she thinks it's funny to scream and slam doors-she just needs the school routine. She turns into kind of a monster when she is out of that routine.

Last Day of Aware of Angels Launch!

I have been so busy with Aware of Angels and HB105 I have neglected this blog a little....sorry! Today is the last day of the AOA launch and just in case you have not visited our website or Facebook page you will want to today! We have a huge giveaway that ends tonight at midnight. It is really easy to enter, just find us on Facebook and look for the blue giveaway tab at the top to enter. You can also enter on Instagram. This has kept me very busy but, we have found lots of new friends and we were able to spread a little bit of Awareness for these Angels!

We also have awesome Aware of Angels shirts! Only for the launch ~ now through Monday the 28th, with a $25 donation to Aware of Angels you can select the shirt of your choice. Details of shirts are on Facebook.This price will raise after Monday to $75. We are a non-profit organization and these funds will go to help our Angels find a diagnosis, research and sponsor the Photography Project. Any questions let me know!!

Facebook Link: https://www.facebook.com/awareofangels?ref=hl

Website Link: http://awareofangels.org/

My Special Project-Aware of Angels

I know I posted awhile ago about a special project I was working on-well, I am ready to launch this project.! It has been in the works for over 6 months now and I am ready to share. Aware of Angels non-profit organization will now be my "baby". I am dedicating full time to this organization. The idea for Aware of Angels started after I had joined a Face Book group for my daughter’s rare genetic disorder. One of the Mom’s in this group was so excited that she was selected to have some photography work done for her daughter by a volunteer photographer. I, being a photographer, thought “what a great idea, how can I sign up to be one of these photographers?” I researched this a little bit and found out there is a national organization of photographers who did this voluntarily and I was about to submit an application when I had the thought “why don’t I just do this on my own?” At the time I was really trying to decide what to do with my business and how I could turn it into something I was really passionate about that also had a lot of meaning to me.  From there, it became not just about photography but, how can I incorporate photography into something much bigger? Aware of Angels became my project. With the experience's I have had with Asia and just knowing how much help is needed for families just like ours I became very passionate about helping. I am going to raise awareness for children with genetic disorders to promote research. I believe awareness equals research and new discoveries made for one group may help another. I will assist those who are still looking for a diagnosis get the testing and doctors appointments needed when out of pocket funds are low and insurance will not cover the cost. I am sure over the years it will become what it needs to be but, in the end it is all about these beautiful children and trying to help them the best we can. I am also including a Aware of Angels - Photography Project:)

If you want to know more or have questions about this organization the website would be a good place to start. http://awareofangels.org/ 

I am virtually "launching" AOA starting tomorrow and running it to 03/28/14
Our Aware of Angels facebook page is the place you will want to go for updates and current news.

We are holding some awesome giveaways on Face Book and Instagram; to have some fun, to try and reach as many families as we can who we may be able to help, to look for sponsors and raise awareness of our organization. Link for giveaways: http://tinyurl.com/ocyr7yk

Thank you! I would love to have as much support as I can get and referrals are great! You can find Aware of Angels on:

Website: http://awareofangels.org/ 
Twitter: https://twitter.com/childgenetics
Instagram: awareofangels
FaceBook: https://www.facebook.com/awareofangels?ref=hl
Pinterest : http://www.pinterest.com/childgenetics/


Season

Charlee

Post for Charlee...

Charlee-I wouldn't feel right about not sharing this information. After the last post, I wanted to let you know that Charlee has ended her battle with Batten Disease. We are grateful for her family and what they did to help pass HB105, as this new law will be known as Charlee's Law. Thoughts and prayers with her family through this tough time.

xo Season

Her Website: http://www.charleesangels.org/
Her FaceBook Page: https://www.facebook.com/charleesangelsbenefit

Cannabis Bill Passes-Will be known as Charlee's Law

It has been a crazy busy exciting couple of weeks, actually I should say months! Asia is doing so well, she took her last Topamax pill about a week ago and she is doing fantastic. You could tell she was having some good and bad days, I suspect that she had a few migraines that included throwing up. I am sure weaning from a medication that she has been taking for years would cause this effect. Her screaming tantrums have calmed down a little and now she is a "laugh-er", and boy has she gotten spunky. If you need her to do something--she will sit down laughing just to be a rebel. She has gotten so fast, she is starting to run (gallop) really quick! New words everyday and her eating has improved a thousand times! Her bus drivers and school teachers are constantly telling me about the new things she is saying and doing and they are sooo excited-it is such a relief. She has begun saying some words she hasn't said in years (including the word "purple"-yes, I am excited about that one) her teacher mentioned she has started calling two classmates by name (we didn't even know she knew their names) it just keeps getting better. Next goal (down the road) will be to wean her off of Depakote--I can not wait for this day. I can't imagine what she could be like without any of these anti-seizure meds messing with her ability to develop and communicate. This brings me to my next topic-

Yes-Yes-and a Yes! You may have seen my past posts on Cannabis, Medical Marijuana, Alepsia, Charlotte's Web, Hemp oil or HB105 and what it meant to us with a child with epilepsy. Well, several amendments later, this week the Utah senate passed unanimously House Bill 105 which will allow the families of Utah, under the supervision of a neurologist, to bring this hemp oil into the state with out fear of prosecution; to treat their children with epilepsy. This gives so many families so much hope. If Asia regresses, and begins to have these severe seizures after being weaned off of her current medications-I will not put her back on them. I will now be able to purchase Hemp oil or "Charlotte's Web" from any state that sells it and bring it back to the state of Utah.

The HB105 process was a lengthy one with hundreds of man hours put in. A process I wish I could detail but there is to much, I don't even know half of all that was done. A special thanks to the dream team: Representative Gage Froerer, Laura Warburton, Senator Steve Urquhart, Jennifer May, Annette Maughan, Emilie Campbell, April Sintz, Realm of Caring and all of the families that help spread awareness and educate others on what this plant can mean for the medical world. The change of heart that we saw in people who started off completely against it were, in a matter of months, for it- this was nothing short of a miracle. Not only is the state very supporting but, I heard several senators mention that this was a first step in this type of treatment. Wow-beginning with a "no way" and ending up with a lot of very open minds. This type of Hemp does not cover all of the medical patients looking to marijuana as a medical treatment and I sympathize with them-hopefully, others will begin to see the many uses of this plant. Different types of marijuana plants have a great potential to help those who are suffering. The bill has a two year sunset to review the progress that our children are having on this oil. I will be so interested to see how the results turn out and where Charlee's Law will take Utah when it comes to alternative medical treatment.

Charlee's Law

HB105 will be dedicated to our special friend Charlee. Charlee battles Batten Disease and is in her last couple days of life. Charlotte's web would not have cured her but, would have helped her control her severe epilepsy. She is a beautiful Angel and her parents brought her to the Senate vote. It was a very emotional time for all parents and senators in that room. I have listed her Face book page and her website below. Please take a minute to look at them. Thoughts and prayers to Charlee's family.

Her Website: http://www.charleesangels.org/
Her FaceBook Page: https://www.facebook.com/charleesangelsbenefit
Charlee's Law: http://fox13now.com/2014/03/11/senate-passes-cannabis-bill/
Charlee: http://www.sltrib.com/sltrib/news/57660495-78/charlee-oil-catrina-cannabis.html.csp

Lots of Links!
Interactive photo gallery of some of the HB105 children. Look for Asia and her friends: http://www.sltrib.com/sltrib/news/57636966-78/sltrib-com-html-http.html.csp

If you want to know more find Hope 4 Children with Epilepsy. Here is the FaceBook Link: https://www.facebook.com/Hope4Children
Website: http://hope4childrenwithepilepsy.com/

Some Recent News Articles:
http://www.sltrib.com/sltrib/opinion/57672075-82/oil-cannabis-utah-federal.html.csp
http://www.ksl.com/?sid=29057129&nid=148&title=families-encouraged-as-lawmakers-ok-hemp-extract-bill
http://kutv.com/news/top-stories/stories/senators-unanimous-favor-cannabis-oil-sick-kids-10081.shtml

Just out-Weed 2:  http://www.cnn.com/2014/03/05/health/gupta-medical-marijuana/index.html

Spread the Word to end the Word 2014

Rare Disease Day 2014

Rare Disease Day February 28, 2014

Here is a link for the US: http://rarediseaseday.us/

This event takes place on a global, national and local level. If there is nothing in your state take action now and tell your representatives that rare diseases are important to you. - See more at: http://rarediseaseday.us/#sthash.ivYDsApq.dpuf

There are national activities to participate in like Handprints Across America. 

Find a way to participate that is right for you, view suggested activities on website for:

• individuals
• organizations
• industry
• medical institutions and academic centers
• schools

- See more at: http://rarediseaseday.us/#sthash.OuwM9mbA.dpuf

Local for myself is Salt Lake City, Utah. This year is the first year that SLC will be participating in Rare Disease Day. If your state is not yet participating contact your representatives!

Rare Disease Day US in Salt Lake City on 2/28/14, Utah State Capitol, Hall of Governors, 3-5 pm

American MedChem Nonprofit Corporation (AMC) (http://americanmedchem.org; Twitter: @americanmedchem) joins the National Organization for Rare Disorders (NORD), http://rarediseaseday.us/; Twitter: @rarediseases ) to observe Rare Diseases Day US in Salt Lake City.

When: February 28, 2014, from 3:00 - 5:00 pm

Where: The Utah State Capitol, Hall of Governors

Short talks are planned at the same venue from 4:00 – 5:00 pm.  

This is the first time that Rare Disease Day US is being officially observed in SLC. Governor Herbert has proclaimed 2/28/14 as Rare Disease Day in Utah.

Speakers (subject to change):

Steve Mikita, JD

Utah Assistant Attorney General

Robert Selliah, PhD

Founder/President of AMC

Joe Cramer, MD

Pediatrician

Intermountain Primary Children’s Hospital

Mike Spigarelli, MD, PhD

Professor of Pediatrics, Internal Medicine and Pharmacy

University of Utah Health Sciences

All are invited to attend and show support to our local community of patients and families afflicted with rare diseases.  Also, lend your help to make this event be a success by sharing this information (email, social media, word-of-mouth, etc) with your friends and families and with patients with rare diseases. AMC and NORD will have a table of exhibits and information to raise awareness about rare diseases.

Robert Selliah, Ph.D.,

Founder, President & CEO

American MedChem Nonprofit Corporation

Salt Lake City, UT, USA

robert@americanmedchem.org 

http://americanmedchem.org

Twitter: @americanmedchem

DISCOVERING NEW MEDICINES TO TREAT KIDS

2q23.1 World Awareness Day is today!!

This is a very important event for Asia and all of the others affected with this syndrome. Awareness equals research! Here is how to show support:

Find the Face Book events page; https://www.facebook.com/events/600818539982916/ and join, then wear something blue and post your pictures on the events page. Visit website link: http://2q23.org/

We are hoping for 1000 pics today! 

You can also show support and post your pics on; 
Twitter https://twitter.com/2q231 @2q231
Instagram  http://instagram.com/2q231 @2q23.1
Pinterest http://www.pinterest.com/2q231/ 

*Make sure you use the hash tag #2qworldawarenessday and tag @2q231

Thank you for all of your support!

Wearing Blue for silly Asia! Happy 2q Awareness Day!

Now is the time to help! HB105

*We have see a lot of support today-thank you!! We can slow down on the emails and contacting your local representative would be the next step-thank you again!!*

In Utah, the Cannabis Extract bill will go to vote soon. Now is the time to help!

HB105 Plant Extracts Amendment
Write to your local representatives!

Link to the bill: http://le.utah.gov/~2014/bills/static/HB0105.html

7      LONG TITLE
8 General Description:
9 This bill amends provisions of the Controlled Substances Act and the Utah Health Code
10 related to hemp extract.
11 Highlighted Provisions:
12 This bill:
13 < exempts an individual who uses or possesses hemp extract, and complies with other
14 requirements, from the penalties related to possession or use of the hemp extract
15 under the Controlled Substances Act;
16 < exempts an individual who possesses hemp extract and administers the hemp
17 extract to a minor from the penalties related to administering the hemp extract to a
18 minor under the Controlled Substances Act;
19 < requires the Department of Health to issue a hemp extract registration card to an
20 individual who meets certain requirements; and
21 < makes technical and conforming amendments

The bill would support anyone, any age, that wanted this extract. It would help to read many/all of the family stories on this website but, there are so many more that could benefit. Here is a copy of what I wrote for Asia and reasons why we want to try Cannabis Extract.   link here: http://hope4childrenwithepilepsy.com/

• Asia

  
  

  
  
  
  
  
  
  
  
  
  
  
  
  
  
  

  
  
  

  
  

When my daughter (Asia) was two years old, we could see that she was developmentally delayed. She never crawled as a baby, was a late “walker”, and had delays with her fine and gross motor skills. Speech was slow but she did have a few words like “hat”, and would wave and say “hi” to everyone. We were already preparing for speech and physical therapies as well as early intervention preschool. We were told that she may have some hearing loss and we were prepared to start using hearing aids and possibly another form of communication like sign language. With all of this, nothing prepared us for the battle of epilepsy.

I remember it like yesterday, my nanny calling me at work in the afternoon saying “Asia is throwing up blood; I don’t know what’s wrong!” Taking her to the ER and them telling me they could not find anything wrong with her. We did not know what was wrong until the following night. We had Asia sleeping next to us because she never looked well after that ER visit. That is when we experienced our first Grand-mal seizure. Nothing can prepare you for this. We realized that night- that the day before she had experienced another Grand-mal and had bitten her tongue, which bled very badly and caused her to throw up. It still breaks my heart today knowing she experienced this without me there to comfort her. Shortly after she started receiving prescription medication for seizures.

Medication stopped the Grand-mal seizures but she then continued having many other types. Next were the Atonic or drop seizures. She could collapse at any given moment, hitting her face on furniture or the floor. If you study Asia’s face you can see the scars that these seizures have left on her eyebrow, bridge of her nose, her chin where she has bitten through her lip. These unpredictable and terrible seizures gave us another type of medication. She continued with many other types of seizures: Simple Motor, Tonic, Clonic, Atonic, Myoclonic and Absence. A stay in the hospital with non-stop seizing for a entire week-where she stopped eating and drinking got us yet another type of medication. I remember being shocked at the size of the vile filled with medicine that was being put into her tiny body. Wondering what types of side effects she may have and what could it be doing to prevent her brain and body from developing properly? We have tried many other therapies including diets, vitamins, and holistic therapies. With all of this medication and the many changes in dosage-Asia’s seizures have not stopped. She continues to have them, mostly Absence right now.

I remembered teaching Asia the word “purple”. It was a stay in the hospital for a sleep study and her bandages were purple. She could repeat it several times. I have not heard her say that word in years. In fact, she only has a handful of words and is mostly non-verbal. She has lost language learned and skills that she had acquired when she was very little. She seems to be functioning at the same age level as my 18 month old. Asia has a rare chromosome disorder called 2q23.1 microdeletion syndrome. This diagnoses we received last winter. With this diagnoses we know from research that she may have developmental delays along with a whole list of symptoms. I do know however, when comparing Asia to some of these other children with 2q23.1-many of them have skills Asia does not have like speech. So where do Asia’s lack of skills come from? Is it from her disorder? Is it caused by seizures that may keep her from retaining information or is it side effects from prescription medications?

At the end of it all, I want to say I did the best I could do. I want to give Asia the best life I can give her. When your child is having a seizure you feel so helpless, there is nothing that can be done to help them. I want to help in any way I can. I want the chance to give Asia a supplement that may stop her seizures and may have virtually no side effects. If I could eliminate these two obstacles-seizures and prescriptions, I could focus only on how to best help her with her syndrome. Maybe she would be “teachable” again. Please allow us access to cannabis extract. The cannabis derived supplement that could stop Asia’s seizures along with countless others.

• Here is how you can help: Email or hand write letters to your senators and local representatives. Show your support on social media outlets. Copy avatar above and get other's familiar with HB105 bill. Please show your support this week. Click here for guidelines on your letters, info on the bill, and to see who your local representative is.  More info:  http://hope4childrenwithepilepsy.com/how-to-help/
• 
  
  
• My cute niece sent this one in support for Asia-we LOVE it! Thank you for all of your support!!
•