Brooke's Personal Page

All About Brooke

Brooke was born at 36 weeks and spent the first 15 days of her life in the NICU learning how to properly feed. After that everything seemed pretty normal for the first 9 months. Then we started to notice that Brooke was not meeting a lot of her milestones.

At 1 year, her Pediatrician recommended we get her evaluated. Her evaluation showed that she was behind on her milestones and she was setup with a physical therapist and a developmental therapist. We also scheduled an appointment with a geneticist. When Brooke was 15 months old we finally met with the geneticist who recommended a barrage of tests. One thing that was looked at was that her head circumference had not increased since she was 1 year old. She also constantly had her hand in her mouth playing with her tongue. After several months of various tests and fighting with the insurance company, we ruled out many possible genetic disorders.

One of the last tests on the list was the MECP2 Genetic test for Rett syndrome. On December 4th we received the devastating call from the Genetics Coordinator that Brooke was diagnosed with Rett syndrome. We have been to our first Rett clinic and we also added speech and occupational therapy. There is a village of people that support our amazing little girl. Her therapists, doctors, friends and family all pitch in and do what they need to help her when they can and we have learned that this village is critical and are very thankful for all of their support.

Now we take everything one day at a time. We have since been doing everything we can to learn more about the Syndrome and what we can do to help our little girl thrive.

 

Fun Fact About Brooke: Brooke loves to listen to music and dance. She loves people and can make anyone smile.

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

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