I wanted to share Chloes video story with you all. Thank you again for helping them! https://youtu.be/7C2h7ExtNx8

*UPDATE*
Unfortunately due to unexpected medical bills and medications my daughter and son inlaw are still short. I know we already asked for so much! We understand if you don't want to contribute. We are trying our best for our sweet Chloe.

Thank you!
Love, Grandma and PopPop
xoxo



Hi everyone and thank you for reading her story!

We are trying to get my granddaughter and daughter to UC Davis in Sacramento California to see a Congenital Myasthenic Specialist. My daughter and son in-law do not have the financial ability to do what the specialist are asking. This is very crucial in getting her taken care of. Chloe has seen numerous pediatric Neurologist that need the knowledge of a CMS specialist. (Congenital Myasthenic Syndrome) We are asking for assistance for traveling expenses for 4 days.


A little about my granddaughters story:
August 2017 was her first " official" fight to find out what was going on with our beautiful 3 year girl. Since she was born she had feeding issues, extreme fatigue and couldn't / wouldn't want to eat. My daughter would go to the doctors about Chloe’s issues and they were just told to see a nutritionist because she was "picky". For her being "tired" they just had to push her harder because she was "lazy". We all came to believe we as grandparents/parents we weren't doing enough and we were failing her. Little did we know at the time she had Congenial Myasthenia Syndrome. In August she had her 2nd crisis; she had stopped breathing on us 3 times by the age of 3 and the 3rd time she took a baby ballet class earlier that day for just a simple 40 minute class. That night she couldn't move and stopped breathing. Chloe was taken to the ER and every test they ran came back normal. The doctors said that she was looking great, even though she could hardly stand up. Fortunately they traded out ER doctors (that's how long we where there) and Alissa (my daughter) began to tell the new Doctor Chloe’s story and he sat and heard everything she had to say. He didn't know what it was but he knew something was not right! He sent them to Phoenix Children Hospital and they stayed there for 4 Days! On the 4th day they ran some tests, scheduled an EMG for a later date and sent them on our way. That night she couldn't hold her head up and was still not getting better (still recovering from her crisis little did we know). The next day Chloe ended back in the ER and had a Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them) which came back abnormal, and did a trial of Mestinon which seemed to work! She was happy and jumping around like a little monkey! We have ever seen her be like this! She was a new girl! I was scared, and happy that she was diagnosed with CMS (Congenial Myasthenic Syndrome).. Fast forward to June 2018, we moved from Arizona to Oregon to get her out of the heat that put her in crisis’s and she has upped her dose a couple times. She is doing great on some days and others aren't the best! Lately she has been getting worse with her exertion not being able to walk, sit up and most days eat. Unfortunately this is not curable but treatable with the right medication and guidance that the specialists that can help Chloe medically.

But we wont give up! CMS wont stop us!!

Times are hard and any amount would be appreciated!

Thank you!
Love, Grandma and PopPop
xoxo


You can follow Chloe's story at : https://www.facebook.com/momofabeautifuldaughter/