Chips, Cheese and Sometimes Marshmallows

Life with 2q23.1 microdeletion syndrome (chromosome 2)

Chips, Cheese & Sometimes Marshmallows? What? Let me explain, if anyone knows my daughter Asia this completely makes sense:) Not only do we have many medical issues but, food issues are one of our major daily obstacles. You'll see...

Asia's List of Symptoms (2q23.1)

Whether or not all of Asia's Symptoms are related to the 2q23.1 microdeletion is unknown at this time:

At this time her symptoms are: Seizures, Hypotonia (muscle weakness), Development delay, Motor Delay, Language impairment, Non-verbal, Ataxia, Behavioral problems, Sleep disturbances, Short attention span, Repetitive behavior, Aggression, Autistic-like Symptoms, Sensory Processing Disorder (hypo-sensitive), Tongue-tied, Sacral Dimple, Possible Macroglossia (large tongue), Sandal Gap on foot, Constipation, Blepharitis, Hearing loss & Microcephaly.

~This list may be edited with new information~
There are additional symptoms with this rare syndrome that Asia does not have.

Many people contact me to ask what type of testing Asia had to get her diagnoses. Asia had a simple blood test performed which is called a "Cytogenic Microarray". There is a post in the blog that goes over this a little more.

Conact Info and Support Group

2q23.1 Microdeletion Syndrome has a great support group on Facebook. It is a closed group where parents can discuss their questions/concerns about their children with 2q. When logged into FB just search 2q23.1 Microdeletion Syndrome and find the closed group and "join". Also, please feel free to email me with any questions at

Friday, March 28, 2014

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!!

Sunday, March 16, 2014

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. 

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:
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:

Instagram: awareofangels
Pinterest :


Saturday, March 15, 2014


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:
Her FaceBook Page:

Friday, March 14, 2014

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:
Her FaceBook Page:
Charlee's Law:

Lots of Links!
Interactive photo gallery of some of the HB105 children. Look for Asia and her friends:

If you want to know more find Hope 4 Children with Epilepsy. Here is the FaceBook Link:

Some Recent News Articles:

Just out-Weed 2: