Ariel's fight!

Ariel was born with a rare condition called polymicrogyria "PMG". It is a malformation of the brain. It can cause a lot of different symptoms, for Ariel this includes seizures, developmental delays, need for constant oxygen, difficulty with urination and sleep apnea. In June there is the first "PMG" conference. Ariel Wants to go. "PMG" is a rare condition and she has never met anyone with her condition. We are trying to raise money for fuel, hotel cost and conference fees. As well as cost of medical care. Ariel goes to therapy twice a week an hour away from home. Her specialist are more than four hour way from here home. although Ariel has insurance there are a lot of cost that are not covered and it is going more difficult for her parents to make ends met. Juat recently in December Ariel spent another 28 day strech in the hospital on life support. This was casued by a rare side affect of one of her siezure meds.  Dec 2013.

We have had an amazing few months! Ariel's respitory system is improving with a new breathing machine that is not typically used in children. It has been doing wonderful things for her. She has only had a three day hospital stay since we were released in Jan 2014. Ariel's needs are changing rapidly. She grows bigger in weight although her lenght is not increasing. She may need grow hormones to correct the issue. The bigger she gets the harder it is to move her and we have found that we stay home more time because I (mom-Liz) can not lift her wheel chair into the car. 

Ariel continues the defy the doctors. Several Research groups having taking an interested in her gen mutation. Gene 2B. For most people with this mutation it is a deletion but for her it is a replacement. Which makes it increasly rare. 

We have had another eventful month. We lost control of the siezure and they reached around 300 a day but praise the lord we back in controlled range. We once again get smiles and she's back to loving life.

We also were informed by her nuerologist have informed us that they do not believe that it is Polymicrogyria. Back to square one. They are now calling it Cobblestone Lissencephaly but they do not truely believe that this is it either they believe that it probaly is a sub type that does not exist yet! Here to the next stage of our life we keep pushing through.
Please share Ariel's Amazing story!