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    Posted June 18, 2014 by
    amaris123
    Assignment
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    This iReport is part of an assignment:
    Raising a special needs child

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    Raising a special needs child

     

    CNN PRODUCER NOTE     Monique Ramos and her husband Ricky are raising their daughter Juliana. The 10-year-old was diagnosed with low muscle weakness throughout her body. Ramos says its from an unknown etiology. Along with her muscle weakness, Juliana also has a small left side lung related to a paralyzed diaphragm.

    Since Juliana was first born, Ramos and her husband knew their daughter was developing slowly. 'When she came out, I wanted to hear the cry of a baby, but instead I heard a cry of a kitten, it sounded so soft and I knew right there that there was something wrong,' she explained.

    Although she is unable to eat on her own and uses a ventilation system to help her breathe at night, Ramos says her daughter is like any normal 10-year-old. They are seeing positive achievements everyday from her because Juliana is trying new things like doing ballet and entering pageants.

    'When Juliana received her tracheotomy we thought, "Wow, how are we going to bring a child home and take care of her with all these special needs?" But you do what you have to when it comes to your child,' she said. Her biggest advice to other parents is to not do the journey alone.

    'We want other parents to know that it takes a lot of time, effort, and attention to make sure your child receives the best support whether your child is special needs or not,' she said. 'Also, we want to remind them they are not alone.'
    - Jareen, CNN iReport producer

    We are the Ramos family. I am Ricky Sr. and Monique is my wife. Our children include Ricky Jr., the oldest, and our daughter, Juliana, who's a wonderful blessing in our lives! Our Julie is 10 years old and has been given a myriad of diagnoses from birth, such as muscle weakness through-out her body, left side diaphragm paralysis and premature lung size. She currently has a tracheotomy to help her breathe, a G-tube for bolus feedings and she sleeps with a Bi-pap at night. These diagnoses are what the medical profession uses to categorize her abilities, but her beautiful attitude towards life and her demanding need for equality have given us, as a family, the ability to look at life with great humbleness! Juliana has reminded us the simplest things in life are taken for granted, such as going from no speech at birth to now reading over 100 words a minute, to being on a machine 24 hours a day for breathing, to now running the half mile in her PE class. From needing assistance to sit up, to performing ballerina and hip-hop moves without help. These are only some of the abilities she now has and, believe me, there are more! But Juliana has been an example of patience, that combined with our faith in God has proven successful time and time again during our journey. Even when the frustration levels hit the all-time peaks, God still provided for us. Our daughter is now going to the 5th grade, loves dancing, slowly eats small portions of pureed foods, and is in the process of working to have her trache removed. All of these are progression! We believe Juliana will live a prosperous life, because, like her, we will not focus on "physical attributes"- those do not complete a person. We will focus on the HEART of a daughter who wants to express her gifting to the fullest. This is what God has "diagnosed" her with! We are so excited to watch Julie grow up, because with every progression there is a new outlook in our lives as well! Thank You God for our blessing!

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