The story of Tara
Read all about Audrey Paiges’s journey written by her mother and number one advocate, Tara.
“Audrey Paige was born 12/7/12 during a planned C section. I was monitored my whole pregnancy because of my age at the time (40) and everything was “normal” even after being born.
She was meeting the little milestones, like smiling. One day I was at a friend’s house and noticed her head was a bit smaller that my friends kids head and it made me think, could something be wrong?
So at her 3 month check up I asked the doctor and he said he was hoping her head would have grown a bit but didn’t and said she was in the bottom 5th % for head circumference. SO he wrote down “microcephaly” on a post it and sent me home with it and a Neurologist referral and that was the beginning of our journey.
After my husband talked me off a ledge, we realized my cousin happen to have been marrying the Chief Pediatric Neurologists daughter at Boston Mass General, so we flew up to Boston for the day and went to Boston’s Children’s Hospital as well. Both neurologist confirmed Audrey would need an MRI of her brain, this is after the CT Scan. They set me up with the Chief Pediatric Neurologist at Weill Cornell in NYC. The MRI confirmed she had severe Microcephaly and was missing part of her Cerebellum. The doctors said, “Audrey will never walk, talk or be a ballerina” They said to get her involved in Early Intervention ASAP. Luckily one of my friends was an OT and immediately helped me start the process.
Audrey started EI at 5 months and received PT, OT and Speech. Our house became a revolving door of therapist every day and still is!
I also had a google alert set up for Microcephaly and in 2016, that blew up. The Zika Virus hit the news and scared a lot of pregnant women out there because of it causing Microcephaly. I challenged my doctors because there was no genetic link to her Microcephaly. We were in the midst of doing a whole Exome Sequencing for genetic tests to see what caused her Microcephaly. Audrey was doing amazing in her therapies and we tired everything and anything that would stimulate her. In addition to her EI services, we did Aqua Therapy, Music Therapy, Hippo Therapy and Intense PT at Keep Moving Forward. Audrey was probably 2 ½ at the time and started her 10 sessions with them and was walking by the end of it! It was amazing to see her walk into my husband’s arms! I enjoy sharing pictures and videos of her walking and running with all her doctors.
Audrey’s genetic results came back when she was about 3 ½ and that is when we received the CASK diagnosis. Doctors explained that at the time she was one of 54 kids in the WORLD with this diagnosis. They explained that it caused MICPCH, which is Microcephaly with a smaller/missing cerebellum. They also did not know much about CASK. But that is where the researcher in me started investigating and found a Face Book group for CASK kiddos! It has been a lifesaver! I cannot tell you how much this group has helped me and we are only stronger in numbers.
I am forever grateful to this group and now newly formed foundation, it gives me hope that we can help our kids be the best that they can be!
Audrey is now 9 years old. She goes to a special school called the Carman Road School where she receives all her therapies, PT, Speech, and OT. She has ABA services after school every day with her wonderful therapist Michele. She attends Keep Moving Forward still to work on her Intense PT and Core Strength. She attends Camp Anchor during the summer where she surfs and rides horses and interacts with her peers. We use Self Direction through NY State and receive a budget that pays for Respite Services, Community Habilitation, Swimming Classes and more. We also use CDPAP services through NYS which gives us 28 hours a week that a relative or family friend can help and will get paid to take care of Audrey. She is Medicaid Waivered and we receive her diapers and other medical supplies monthly. Our family was also on the George To The Rescue show on NBC and had some rooms in our house done over to meet Audrey’s needs. And we had another daughter in 2014, Vivienne who turned out to be the Best Big Little Sister ever! So much so she inspired me to write a Children’s book called The Wish, based on Vivienne’s wish for Audrey to talk!
Moral of the story is be an advocate and don’t let the diagnosis define them. Get your kids into Early Intervention and you will be amazed at what they can do!”
Follow the McCarton family at #audreystory Www.audreymccarton.com