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A heartfelt webpage from Adore Rae featuring purple and white text on a black background. Sections titled “From A Mother’s He

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A child sits in a hospital room working on school assignments using a laptop placed on a movable tray. She wears a nasal oxygen mask and has colorful beads in her braided hair. Medical equipment stands nearby, including an IV pole and monitor. Papers and supplies surround her workspace. The image captures determination and focus — showing that even in a hospital setting, learning continues through perseverance and care.

A child sits in a hospital room working on school assignments using a laptop placed on a movable tray. She wears a nasal oxygen mask and has colorful beads in her braided hair. Medical equipment stands nearby, including an IV pole and monitor. Papers and supplies surround her workspace. The image captures determination and focus — showing that even in a hospital setting, learning continues through perseverance and care.

Balancing Schoolwork and Hospital Life: What’s Actually Realistic

Shaynise Robinson

May 124 min read

Side‑by‑side collage showing Raegan and her best friend through the years. The left photo is from Head Start, where the two girls stand smiling in front of a skee‑ball arcade game; one wears a “Look Who’s 4 Now” shirt. The right photo shows them now, with Raegan seated in her crazy cart shuffle wearing a pink Care Bears outfit while her best friend stands behind her with her hands on Raegan’s shoulders. The images highlight their long, supportive friendship from early childhood to today.

Side‑by‑side collage showing Raegan and her best friend through the years. The left photo is from Head Start, where the two girls stand smiling in front of a skee‑ball arcade game; one wears a “Look Who’s 4 Now” shirt. The right photo shows them now, with Raegan seated in her crazy cart shuffle wearing a pink Care Bears outfit while her best friend stands behind her with her hands on Raegan’s shoulders. The images highlight their long, supportive friendship from early childhood to today.

The Power of Genuine Friendship for Children Living With Chronic Illness

Shaynise Robinson

May 53 min read

Educational poster titled “Understanding Hepatopulmonary Syndrome & the Need for a Wheelchair.” It shows a young Black girl wearing a yellow hoodie and nasal oxygen tubing, seated in a wheelchair against a soft green‑yellow background with floral accents. On the right, medical illustrations depict lungs with dilated blood vessels, a diseased liver, and symptoms such as shortness of breath, cyanosis (bluish lips and fingertips), fatigue, and dizziness. Text explains that hepatopulmonary syndrome causes widened lung vessels, poor oxygen transfer, and low blood oxygen, often requiring supportive oxygen therapy and wheelchair use.

Educational poster titled “Understanding Hepatopulmonary Syndrome & the Need for a Wheelchair.” It shows a young Black girl wearing a yellow hoodie and nasal oxygen tubing, seated in a wheelchair against a soft green‑yellow background with floral accents. On the right, medical illustrations depict lungs with dilated blood vessels, a diseased liver, and symptoms such as shortness of breath, cyanosis (bluish lips and fingertips), fatigue, and dizziness. Text explains that hepatopulmonary syndrome causes widened lung vessels, poor oxygen transfer, and low blood oxygen, often requiring supportive oxygen therapy and wheelchair use.

Understanding Hepatopulmonary Syndrome — and Why It Can Lead to Wheelchair Use

Shaynise Robinson

Apr 293 min read

Advocating for a medically complex child is powerful, heart‑centered work, and it asks more of you than most people will ever see. Staying connected with Raegan’s medical team or a mental health professional when stress or exhaustion begins affecting your daily functioning is an important part of keeping both you and your child supported. Your well‑being is not optional—it’s foundational. Recognizing when your energy is slipping I’ve learned to notice the earliest signs that my energy is fading. When simple day‑to‑day tasks—or even people—start to irritate me, that’s my signal to pause. I check in with myself and ask, “Shay, what is it that you need?” Sometimes the answer is rest. Sometimes it’s a real meal. Sometimes it’s giving myself permission to enjoy something that brings me joy—reading, creating for Adore Rae, or crafting. These moments of honesty with myself keep me from running on empty. Prioritizing what truly requires you This has been a major area of growth for me. I’ve h

Advocating for a medically complex child is powerful, heart‑centered work, and it asks more of you than most people will ever see. Staying connected with Raegan’s medical team or a mental health professional when stress or exhaustion begins affecting your daily functioning is an important part of keeping both you and your child supported. Your well‑being is not optional—it’s foundational. Recognizing when your energy is slipping I’ve learned to notice the earliest signs that my energy is fading. When simple day‑to‑day tasks—or even people—start to irritate me, that’s my signal to pause. I check in with myself and ask, “Shay, what is it that you need?” Sometimes the answer is rest. Sometimes it’s a real meal. Sometimes it’s giving myself permission to enjoy something that brings me joy—reading, creating for Adore Rae, or crafting. These moments of honesty with myself keep me from running on empty. Prioritizing what truly requires you This has been a major area of growth for me. I’ve h

10 Ways to Advocate for Your Child Without Becoming Burned Out

Shaynise Robinson

Apr 144 min read

A glowing lighthouse stands on a small island surrounded by dark water, casting warm light across the scene. Text on the image reads “Adore Rae” with a butterfly design, “Creating Joy on Purpose” in bright pink and white, and “Even in the Dark She Still Shines” in cursive at the bottom, symbolizing hope and intentional joy.

A glowing lighthouse stands on a small island surrounded by dark water, casting warm light across the scene. Text on the image reads “Adore Rae” with a butterfly design, “Creating Joy on Purpose” in bright pink and white, and “Even in the Dark She Still Shines” in cursive at the bottom, symbolizing hope and intentional joy.

🌼 Creating Joy on Purpose: Why Experiences Matter More Than Things for Medically Complex Children

Shaynise Robinson

Apr 73 min read

Medical illustration showing how sickle cell anemia can lead to avascular necrosis. The image displays sickle‑shaped red blood cells on the left and an anatomical diagram of the pelvis and hip on the right, highlighting bone damage in the femoral head. The hip joint is shown with red coloration to represent tissue injury caused by reduced blood flow

Medical illustration showing how sickle cell anemia can lead to avascular necrosis. The image displays sickle‑shaped red blood cells on the left and an anatomical diagram of the pelvis and hip on the right, highlighting bone damage in the femoral head. The hip joint is shown with red coloration to represent tissue injury caused by reduced blood flow

Sickle Cell Anemia & Avascular Necrosis: Understanding a Painful but Common Complication

Shaynise Robinson

Mar 314 min read

Medical illustration showing the progression of sickle cell disease inside a blood vessel. Normal red blood cells gradually become sickle‑shaped, leading to clumping, blocked blood flow, and vessel obstruction. The panels highlight how sickled cells cause pain and organ damage.

Medical illustration showing the progression of sickle cell disease inside a blood vessel. Normal red blood cells gradually become sickle‑shaped, leading to clumping, blocked blood flow, and vessel obstruction. The panels highlight how sickled cells cause pain and organ damage.

Understanding the Connection Between Sickle Cell Disease and Brain Aneurysms

Shaynise Robinson

Mar 243 min read

Illustration of a Black mother with closed eyes and hands over her heart, standing calmly in a purple “Adore Rae” shirt while chaotic medical scenes surround her. Behind her are storm clouds, an ambulance with flashing lights, two medical professionals in discussion, and a hospital monitor showing unstable vitals. In the lower corner, a sick child lies in a hospital bed with an oxygen tube and a teddy bear. Text reads “When Calm Becomes a Survival Skill” and “The Hidden Reality of Caregiving in Chronic Illness.”

Illustration of a Black mother with closed eyes and hands over her heart, standing calmly in a purple “Adore Rae” shirt while chaotic medical scenes surround her. Behind her are storm clouds, an ambulance with flashing lights, two medical professionals in discussion, and a hospital monitor showing unstable vitals. In the lower corner, a sick child lies in a hospital bed with an oxygen tube and a teddy bear. Text reads “When Calm Becomes a Survival Skill” and “The Hidden Reality of Caregiving in Chronic Illness.”

When Calm Becomes a Survival Skill: The Hidden Reality of Caregiving in Chronic Illness

Shaynise Robinson

Mar 172 min read

Video of a mother and daughter in the kitchen measuring out Essential Care Junior formula together. The mother pours the powder while Raegan watches closely and helps hold the container. Both appear focused and gentle with each step, showing their daily routine of preparing Raegan’s nutritional supplement.

Video of a mother and daughter in the kitchen measuring out Essential Care Junior formula together. The mother pours the powder while Raegan watches closely and helps hold the container. Both appear focused and gentle with each step, showing their daily routine of preparing Raegan’s nutritional supplement.

The Nutritional Formula We Chose for Raegan — And Why I Feel Called to Share Our Experience

Shaynise Robinson

Mar 104 min read

✨ Caregiver’s Corner — Post #1: Living Between Timers

✨ Caregiver’s Corner — Post #1: Living Between Timers

✨ Caregiver’s Corner — Post #1: Living Between Timers

Shaynise Robinson

Mar 43 min read

“A young girl with an NG tube on her cheek smiles softly while wearing pajamas. The photo shows her at around nine years old, happy and confident, capturing her joyful personality before her chronic illness journey became more complex.”

“A young girl with an NG tube on her cheek smiles softly while wearing pajamas. The photo shows her at around nine years old, happy and confident, capturing her joyful personality before her chronic illness journey became more complex.”

5 Ways to Remove the Stigma Around NG Tubes: Inspired by Raegan's Journey

Shaynise Robinson

Feb 242 min read

Raegan's Mother in the video giving an update on Liver Tranplant

Raegan's Mother in the video giving an update on Liver Tranplant

Liver Transplant Update — Part 2

Raegan's Updates

Shaynise Robinson

Feb 181 min read

person with sickle cell disease getting a blood transfusion risking iron overload

person with sickle cell disease getting a blood transfusion risking iron overload

💜 Understanding Iron Overload in Sickle Cell: Raegan’s Newest Challenge

Shaynise Robinson

Feb 103 min read

the Mom of Adore Rae is speaking to give a liver transplant update

the Mom of Adore Rae is speaking to give a liver transplant update

Liver Transplant Update: Part 1 — What We Learned

Raegan's Updates

Shaynise Robinson

Feb 42 min read

A collection of educational materials about pediatric liver and organ transplants displayed on a light surface. Items include illustrated booklets titled “Organ transplants: What Every Kid Needs to Know,” “How to Find a Living Donor,” and a spiral-bound “Liver Transplant Handbook for Patients and Families” from Children’s Healthcare of Atlanta. A green pamphlet outlines transplant medication tips and contact information. The materials are designed to support children and families navigating transplant care.

A collection of educational materials about pediatric liver and organ transplants displayed on a light surface. Items include illustrated booklets titled “Organ transplants: What Every Kid Needs to Know,” “How to Find a Living Donor,” and a spiral-bound “Liver Transplant Handbook for Patients and Families” from Children’s Healthcare of Atlanta. A green pamphlet outlines transplant medication tips and contact information. The materials are designed to support children and families navigating transplant care.

Our Two‑Day Liver Transplant Evaluation: A Journey of Answers, Emotion, and Hope

Shaynise Robinson

Jan 82 min read

Golden-brown empanadas on a blue plate with purple floral decor and Adore Rae branding.

Golden-brown empanadas on a blue plate with purple floral decor and Adore Rae branding.

🌿 The Power of a Holistic Diet in the Fight Against Chronic Illness

Shaynise Robinson

Dec 30, 20253 min read

Lighthouse in the dark shinning the light, representing Rae, The Light

Lighthouse in the dark shinning the light, representing Rae, The Light

Top 10 Reasons Online School Supports Children with Chronic Illness

Shaynise Robinson

Dec 18, 20252 min read

- The condition: hepatic encephalopathy

- The condition: hepatic encephalopathy

When the Liver Affects the Mind: Raegan’s Fight Against Hepatic Encephalopathy

Shaynise Robinson

Dec 9, 20252 min read

a little girl with oxygen on who faces challenges from cirrhosis of the liver

a little girl with oxygen on who faces challenges from cirrhosis of the liver

💜 Cirrhosis of the Liver: A Sickle Cell Complication, Not an Alcohol Story

Shaynise Robinson

Dec 2, 20252 min read

illustration showing sickle cell complications for Raegan

illustration showing sickle cell complications for Raegan

💜 Understanding Sickle Cell Anemia: Raegan’s Journey

Shaynise Robinson

Nov 25, 20252 min read

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