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

Thursday, October 24, 2013

Epilepsy Awareness Day at Disneyland 2013

November will be Epilepsy Awareness Month-this event is coming up quick!
I have always wanted to bring Asia to Disneyland...First, because she loves rides:) She loves a ride that will take her really fast and high into the air. She smiles and giggles the whole time. I think she would absolutely love Disneyland. She loves watching Disney on TV and when she says she wants to go to the "mall" she really means she wants to go to the "Disney Store" in the mall. She gets mad when we go into a different store for shopping because she only has 1 place she wants to go! It is very difficult to go anywhere with her and my other kids. She requires so much attention and I have a toddler-which also requires a lot of attention. I often considered going because Disney had a great policy for people with Disabilities- being able to avoid the long lines. Asia would definitely not be able to handle those long lines, she tires so easily. This privilege was being abused by so many that Disney had to change the policy. They now have a "new" policy. They will still be accommodating but plan ahead. Click this link below for all of the details.
Links for Disney Parks Disability Access Service Card Fact Sheet

I don't think we will be able to go this year but, if there was ever a good time to go it would be this day! Disneyland sponsored-Epilepsy day at Disney-November 7,2013 We want Disneyland to be covered in purple to bring awareness to this disorder that affects 1:26 people.

About The Event

Where: Disneyland Resort Anaheim California
When: November 7th, 2013
Who: people of all ages with epilepsy, their families and friends, and those whose lives are touched by epilepsy or want to raise awareness for epilepsy
What’s included: entrance to Disneyland, official Disney character purple event shirt and limited edition event tote bag with information and gifts
Season Passport Holders can obtain a “participant pack” which includes event gift bag and shirt
Benefits: Each ticket or participant pack purchase will include a $5 donation to one of the participating non-profit epilepsy related groups

A couple of FAQ's

What do I get with my ticket purchase?
The purchase of your ticket includes a full day entrance to Disneyland’s Magic Kingdom park (that’s the main park. Entrance to California Adventures is not included, sorry!), as well as a Participant Pack which contains a limited edition purple event shirt featuring a Disney character, and an event bag!

What is this about a Participant Pack? Do I need to have one? Can I just come to Disneyland that day without purchasing a Participant Pack?
The Participant Pack is a really neat SWAG Bag (Stuff We Always Get) of goodies prepared just for Epilepsy Awareness Day at Disneyland Resort 2013! It contains a limited edition Epilepsy Awareness Day purple T-shirt and tote bag which can only be obtained by purchasing the participant pack. They will not be sold anywhere else! In addition, the Participant Pack will be full of all sorts of helpful information about Epilepsy. Do you need one to participate? Absolutely not. However, by purchasing the pack, you will be helping to increase our funds which will go to support epilepsy research and awareness. Plus, you’ll look super fly in that purple shirt ;)
This all sounds great! How much does it cost to attend Epilepsy Awareness Day at Disneyland, and where can I get my ticket?
Entrance to the park on Epilepsy Awareness Day will cost the same as a regular adult single-day, single-park ticket: $92. Tickets can be purchased from our Store page.
Link for EADDL2013 Site purchase tickets and Participant Packs here. Remember to get participant packs for everyone-so you can all be wearing the official purple shirt:) For more questions please visit site!

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