{"id":4841,"date":"2024-01-06T00:00:08","date_gmt":"2024-01-06T08:00:08","guid":{"rendered":"https:\/\/florida2024.nextgenradio.org\/?page_id=4841"},"modified":"2024-01-06T09:21:24","modified_gmt":"2024-01-06T17:21:24","slug":"meaning-of-home-katie-seeright-mother-family-lakeland-aicardi-syndrome-rare-disease-thomas-ouellette","status":"publish","type":"page","link":"https:\/\/floridanewsroom2024.nextgenradio.org\/meaning-of-home-katie-seeright-mother-family-lakeland-aicardi-syndrome-rare-disease-thomas-ouellette\/","title":{"rendered":"Lakeland mother helps daughter with rare disease feel at home"},"content":{"rendered":"
[et_pb_section fb_built=”1″ fullwidth=”on” _builder_version=”4.17.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_fullwidth_image src=”https:\/\/florida2024.nextgenradio.org\/wp-content\/uploads\/sites\/75\/2024\/01\/Thomas_Yunyi.gif” alt=”The illustration portrays Sonya Mallard gazing into the historical moments of Harry T. and Harriette Moore, who are shown standing before their home.” title_text=”Thomas_Yunyi” admin_label=”Hero Image” _builder_version=”4.21.0″ _module_preset=”default” background_image=”https:\/\/florida2024.nextgenradio.org\/wp-content\/uploads\/sites\/75\/2024\/01\/Hero_FPO.gif” global_colors_info=”{}”][\/et_pb_fullwidth_image][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.18.0″ _module_preset=”default” custom_padding=”16px||20px|||” global_colors_info=”{}”][et_pb_row _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Illustrator Credit” _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
YUNYI DAI \/ NEXTGENRADIO<\/small><\/p>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Section: Reporter Standup and Project Description” _builder_version=”4.20.4″ _module_preset=”default” custom_padding=”||||false|false” global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ _builder_version=”4.16″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text admin_label=”Title: Project Theme: DO NOT EDIT” _builder_version=”4.21.0″ _module_preset=”default” text_font=”||||” text_text_color=”#1a1a1a” text_font_size=”29px” header_font=”Oswald|on||on|” header_text_align=”left” header_text_color=”#E02B20″ header_font_size=”60px” header_2_font_size=”27px” max_width=”450px” custom_margin=”|||” custom_padding=”|||” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”10%” locked=”off” global_colors_info=”{}”]<\/p>\n
What is the meaning of<\/strong><\/p>\n [\/et_pb_text][et_pb_text admin_label=”Title: Project Theme: DO NOT EDIT” _builder_version=”4.21.0″ _module_preset=”default” text_font=”Oswald|700||on|||||” text_text_color=”#b276b2″ text_font_size=”72px” header_font=”Oswald|on||on|” header_text_align=”left” header_text_color=”#20ace8″ header_font_size=”72px” header_3_line_height=”0em” max_width=”450px” custom_margin=”|||0px|false|false” custom_padding=”|||” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”10%” hover_enabled=”0″ locked=”off” global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n home?<\/p>\n [\/et_pb_text][et_pb_divider color=”#20ace8″ divider_position=”center” divider_weight=”3px” disabled_on=”off|off|off%22″ admin_label=”Divider: : DO NOT EDIT” _builder_version=”4.20.2″ _module_preset=”default” max_width=”195px” height=”false” custom_margin=”30px|||” animation_style=”slide” animation_direction=”top” animation_delay=”100ms” animation_intensity_slide=”10%” locked=”off” global_colors_info=”{}”][\/et_pb_divider][et_pb_text admin_label=”Project description ” _builder_version=”4.21.0″ _module_preset=”default” text_font=”Roboto||||” text_text_color=”#1a1a1a” text_font_size=”24px” text_line_height=”1.4em” background_size=”initial” background_position=”top_left” background_repeat=”repeat” max_width=”450px” custom_padding=”30px|||” animation_style=”slide” animation_direction=”top” animation_delay=”200ms” animation_intensity_slide=”10%” locked=”off” global_colors_info=”{}”]<\/p>\n [\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ _module_preset=”default” custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_video src=”https:\/\/youtu.be\/7cSWuCV_9vk” play_icon_color=”#ffffff” admin_label=”Reporter Standup Video” _builder_version=”4.21.0″ _module_preset=”default” animation_style=”zoom” animation_direction=”bottom” animation_intensity_zoom=”6%” global_colors_info=”{}”][\/et_pb_video][et_pb_text admin_label=”Standup description” _builder_version=”4.21.0″ _module_preset=”default” text_font=”Roboto||||” text_font_size=”18px” background_size=”initial” background_position=”top_left” background_repeat=”repeat” max_width=”523px” custom_margin=”||||false|false” custom_padding=”||60px|” animation_style=”slide” animation_direction=”top” animation_delay=”400ms” animation_intensity_slide=”4%” locked=”off” global_colors_info=”{}”]<\/p>\n Thomas Ouellette speaks with Katie Seeright, a mother of two who faces challenges in her home everyday. In addition to raising a toddler, Katie\u2019s 6-year-old daughter Adeline suffers from an incredibly rare disease called Aicardi syndrome that prevents her from being able to take care of herself. Katie is ready at all times for when her daughter needs her. Through it all, the Seeright family does everything they can to make a home despite the challenges.<\/span><\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Section: Headline Area” _builder_version=”4.18.0″ _module_preset=”default” parallax=”on” custom_padding=”26px||10px||false|false” global_colors_info=”{}”][et_pb_row _builder_version=”4.16″ _module_preset=”default” locked=”off” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ _module_preset=”default” custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_post_title meta=”off” featured_image=”off” admin_label=”Headline: : DO NOT EDIT HERE” _builder_version=”4.17.4″ _module_preset=”default” title_font=”|700|||||||” title_text_align=”left” title_font_size=”60px” title_line_height=”1.2em” meta_font=”|600|||||||” meta_text_color=”#E02B20″ meta_font_size=”24px” meta_line_height=”2em” global_colors_info=”{}”][\/et_pb_post_title][et_pb_post_title title=”off” comments=”off” featured_image=”off” admin_label=”Byline: : DO NOT EDIT HERE” _builder_version=”4.18.0″ _module_preset=”default” title_font=”Oswald|700|||||||” title_text_align=”left” title_font_size=”60px” meta_font=”|600|||||||” meta_text_color=”#20ace8″ meta_font_size=”24px” meta_line_height=”2em” global_colors_info=”{}”][\/et_pb_post_title][et_pb_audio audio=”https:\/\/florida2024.nextgenradio.org\/wp-content\/uploads\/sites\/75\/2024\/01\/NextGen_FLNwsRm_2024_THOMAS_master.mp3″ title=”Listen to the Story” artist_name=”Thomas Ouellette” album_name=”Next Generation Radio | Florida Newsroom in Orlando, FL | January 2024″ admin_label=”Audio Player” _builder_version=”4.21.0″ _module_preset=”default” background_enable_color=”off” background_image=”https:\/\/florida2024.nextgenradio.org\/wp-content\/uploads\/sites\/75\/2024\/01\/Waveform_2.png” custom_padding=”20px||20px||false|false” border_radii=”on|90px|90px|90px|90px” global_colors_info=”{}”][\/et_pb_audio][et_pb_toggle title=”Click here for audio transcript” admin_label=”Audio Transcript” _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n KATIE:<\/p>\n My name is Katie Seeright. I am a stay at home mom with two kids: Adeline, age 6, and Oliver, age 5.\u00a0\u00a0<\/span><\/p>\n My 6-year-old is a special needs, very medically complex child.<\/span><\/p>\n Before Adeline was born, home was me and David. He’s a fire captain as well as a paramedic. And then when Adeline was born, it came to include her. And so, I mean, our house is our home, but it wouldn’t be a home without David, it wouldn’t be a home without Adeline, and now Oliver as well.\u00a0<\/span><\/p>\n Adeline, when she was born, we very quickly found out that she was not a typical child. That she was special needs. And so we began lots of doctor’s appointments, lot of hospital stays. And so home also became a place where we were nervous. You know, we had just brought a new baby home. It was our first child and there was a lot of scary stuff happening and so there was also a lot of anxiety.<\/span><\/p>\n She was very tiny, she was 5 pounds, 5 ounces.Then she had an ultrasound of her head the following day and we started to hear some things about, you know, a cyst in her brain and some abnormalities. At eight days old, we were discharged from the NICU and went straight for our first neurology appointment, but our neurologist took one look at her MRI and it had so many abnormalities that matched up with criteria for Aicardi syndrome.\u00a0<\/span><\/p>\n She also had detached retinas, her eyes were not fully formed, her optic nerves weren’t fully formed. Adeline had her first seizure at exactly 7 weeks old. That’s when we started lots of hospitalizations. In the beginning, it was like we got diagnosis after diagnosis. And it was hard. You know, you’re trying to enjoy your new baby, but getting a lot of bad news at the same time and not really sure what the future was going to hold for her.\u00a0<\/span><\/p>\n \u201cHow about an ironworker? Firefighter, crime fighter, television script writer. Some folks make good picture framers. Some folks make good lion tamers. What do you think of that?\u201d<\/span><\/p>\n It sometimes felt like home was being ripped out, I guess, a little bit from us, and what we expected it to be. It still was home, though.<\/span><\/p>\n \u201cTennis pro, optometrist, crossing guard podiatrist, chemist, lepidopterist?\u201d<\/span><\/p>\n The hardest part of things when David isn’t here is usually if something out of the norm happens that I’m not expecting. It has its challenges, he is gone for 24 hours at a time, sometimes 48 if they have overtime.<\/span><\/p>\n This past summer, her leg broke and David was at work and that was a, that was a little bit more challenging cause we didn’t quite know what we were dealing with at first and it involved an ER visit and everything and it was an ordeal, even just changing her diaper. I mean, how we did everything changed, because her whole leg was in a cast.\u00a0<\/span><\/p>\n Some things are different, even though it’s Christmas or New Year’s or anything, Adeline still needs medication first thing in the morning. You don’t get to sleep late. You still have to make her food, change diapers. Even just planning gifts. It’s hard to plan a gift for her and that can be a bittersweet thing because I love her and she’s sweet, but I don’t know what to give her for Christmas.\u00a0<\/span><\/p>\n We could make a new home somewhere else if we had to, but it wouldn’t be a home if it wasn’t with David, Adeline, and Oliver. They’re what truly makes home home.<\/span><\/p>\n <\/p>\n [\/et_pb_toggle][et_pb_divider color=”#20ace8″ divider_position=”center” divider_weight=”3px” disabled_on=”off|off|off%22″ admin_label=”Divider: : DO NOT EDIT” _builder_version=”4.18.0″ _module_preset=”default” max_width=”150px” module_alignment=”center” height=”false” custom_margin=”||||false|false” custom_padding=”50px||||false|false” animation_style=”slide” animation_direction=”top” animation_delay=”100ms” animation_intensity_slide=”10%” locked=”off” global_colors_info=”{}”][\/et_pb_divider][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Section: Story Area” _builder_version=”4.18.0″ _module_preset=”default” custom_padding=”10px||||false|false” global_colors_info=”{}”][et_pb_row _builder_version=”4.17.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.17.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/florida2024.nextgenradio.org\/wp-content\/uploads\/sites\/75\/2024\/01\/Seeright_1.png” alt=”A young girl sits in her wheelchair while her mother and father read to her from the couch next to her.” title_text=”Seeright_1″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][et_pb_text admin_label=”CAPTION TEXT” _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n Katie and David Seeright read a Dr. Suess book to their daughter on Tuesday, Jan. 2, 2024. Because of Adeline\u2019s condition, reading is one of the only activities the family can easily do together.<\/p>\n THOMAS OUELLETTE \/ NEXTGENRADIO<\/small><\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_5,3_5,1_5″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”1_5″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_column][et_pb_column type=”3_5″ _builder_version=”4.21.0″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Story Text” _builder_version=”4.21.0″ _module_preset=”default” text_font=”Arial||||||||” text_text_color=”#353535″ text_font_size=”18px” global_colors_info=”{}”]<\/p>\n