All About Mia

Mia was born 4 weeks early, weighing in at 5lbs 9oz, she was a happy healthy little girl, she ended up staying in NICU for about 30 days because of feeding issues. Just 2 short months of her little life she became very sick with a terrible cough, we took her to the Dr multiple times over a 1 month period Dr's kept telling us it was a viral infection, had to run its course. At 3 months, we were in the process of moving from Texas to Florida, which was a total nightmare because her cough had gotten so bad I had to pull over every time she started coughing to suck her throat out because she would turn blue, we ended up pulling over at a local Hospital in Ocala, FL were they transported Mia back to SHANDS in Gainesville, FL where we stayed for 3 days.

We finally got a diagnosis "pertussis" or whooping cough, after being released Mia was very fragile still, she got held ALOT, lol. Everything, kinda returned to normal after a few months. We started noticing Mia being delayed she could not roll, no babbling, crawl or sit and was toe walking in her walker at 1 yr old. At our 1 yr check up we talked to the Dr told her our concerns, she was somewhat concerned she noticed her feet were severely tight so she send us to PT, we started PT the next week, got AFO'S a month later and she started walking 2 days after getting her braces. Although, we were excited about her walking she was not very willing to do anything but "walk".

Within the year she did learn to sit up on her own and roll over to some degree not completely and not talking (no babbling, no sounds), she still refused to crawl. PT referred us to Early Steps, Early Steps evaluated and determined Mia was severely behind, to the point of not even being aware that shes around other people, places or things. Early Steps sent us to OT, and ST so now we are doing PT, ST and OT we did this for a year with slow progress.

That brings us to August 10, 2014, this is the day that changed Mia. She had an Inguinal Hernia repair, when they brought her back to me and after we got home she was not the same Mia, she literally "shut down" stopped everything she had worked on at PT, OT and ST. In a month I took her to the Dr. 5 times, I kept telling them something is wrong, they couldn't find anything. After a months time Mia slowly started coming back to herself.

In December, we went to see Genetics, gave Mia's history, told her about the surgery and afterwards she said she wanted to test for Rett syndrome. On January 18, 2015 we got the dredfull news, Mia has Rett syndrome. I could not believe it, it was like my whole world came crashing down. All I could think, was my poor baby, she's been through so much, why her. After, a few days to sink in we jumped right in and started finding Dr's, getting clerance, and increased therapies, it has been a rough roller coaster ride but we got it done. Mia is now "progressing" very slowly but still progressing, she loves to watch Disney Jr, she loves almost any kind of books and loves to be outside. She is happy most of the time and loves to laugh.

Fun Fact About Mia: Mia loves to listen to music and dance. She loves being outside and going to SeaWorld.

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Support Mia's fight against Rett syndrome. Donate today in honor of Mia. All money will go to to help accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity. 

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