Early Years

Supporting Families & Caregivers

Early Years

Emma’s Family

“Our 2 year old daughter Emma, was born at 27 weeks, 13 weeks early and is the older sister to her twin Sophia. We learned that Emma would have Down syndrome when I was 12 weeks pregnant. Emma is an open heart surgery survivor and is one of the strongest little girls I know. Emma has chronic lung disease as a result of her prematurity, a hearing loss which requires a hearing aid, she wears braces to help her learn to stand and walk, wears glasses to address a stigmatism and she communicates primarily through the use of American Sign Language. At night when Emma goes to bed, she requires oxygen and an O2 monitor to track her heart rate and O2 saturation levels while she sleeps. Emma has a team of 12 specialists that monitor her and address her complex medical needs. As, parents, it is our responsibility to teach Emma to communicate with her world so she can express her needs and desires and articulate the life she wants as she develops and grows. After all, Emma loves to read, sign, and play with her sister, her dog, go to park, play with friends, just like her sister, and she would tell you this too if she could! Emma and Sophia are both amazing children with limitless potential to grow into amazing individuals who will one day live independently in an inclusive environment amongst peers. For now, this means ensuring Emma is included without reservation and accommodations are made for her to be included not excluded. We imagine that Emma will be treated, challenged and held to the same expectations like Sophia. We imagine that Emma will grow up so she can express her needs and desires, while articulating and dreaming of what she wants to be when she does grow up. Emma will not be able to live the live she deserves without the programs that are funded by DDS. It is VITAL that DDS line items for family supports and respite services be funded to ensure families receive the critical support necessary to care for their loved ones. These are two small BUT very important areas of funding that make significant difference in families lives and will help us –Mandee and Jeremy- as we care for Emma throughout her lifetime.”

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