Blogs by Grey

Photo Hunt Giveaway

The B.L.A.I.R. Connection Photo Hunt is a chance for siblings to reminisce on memories with their brother or sister. Each week in September, I will be posting photos of siblings doing different activities. If you’re the sibling of someone with a terminal illness, submit a photo each week based on… Read More

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The Scariest Night: My Perspective at Age 9

Have you ever had a scary event in your life, but it ended up making you feel more confident? One summer night, my mom and I did. That night, I was lying in my bed as quiet as a mouse. Blair was in her room, my mom was downstairs, and my dad was out of town (three hours away). I would never guess that this crazy night would change my life, forever. Read More

ANNOUNCEMENT

I am very excited to announce that I will be starting a quarterly newsletter to keep siblings updated on The B.L.A.I.R. Connection. The newsletter will include blog ideas, surveys, giveaways, and more! Whether you’re a sibling or a parent, this is a great way to stay in the loop with… Read More

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5,000 Words about My Website

This is the report that I submitted to judges at the Future Problem Solving International Competition. The document goes into depth about every action I took to complete this project.   Area of Concern: My older sister, Blair, was diagnosed with Sanfilippo Syndrome at age six. Sanfilippo, also… Read More

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My Sister’s Funeral

I always knew that without a cure, my sister’s time with us would be limited. And with this inevitable loss of my sweet Blair, there would be a funeral. While our family always aimed to think positively about Blair’s illness, this is the only detail about the end of her life that came to my mind often in the years before her passing. Read More

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One Year of The B.L.A.I.R. Connection

Today, May 26th, marks one year since I launched The B.L.A.I.R. Connection. I’ve been overwhelmed by the support for the website, with over 5,000 visitors. I am also so grateful for the siblings who have contributed to the website in any way. Read More

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Henry & Blair

Yesterday, the Cure Sanfilippo Foundation launched an awareness campaign about my dog, Henry, and his relationship with Blair. My sister, Blair, and Henry were best friends and he misses her so much ever since she passed away due to Sanfilippo in 2017. Learn more about their one of a kind bond in this video and share to raise awareness for Sanfilippo Syndrome. Read More

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Bereaved Siblings & Mental Health

May is Mental Health Month. I recently found several statistics about siblings of the terminally ill and their mental health that further proves the need for sibling support programs. 5-8% of children have lost a sibling. Although each of these siblings goes through a unique set of challenges, one common factor is affected... their mental health. Read More

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Cure Sanfilippo Foundation Q&A

Recently, I had the opportunity to be interviewed by the President of the Cure Sanfilippo Foundation, Glenn O'Neill. The foundation raises funds to find a cure for the illness that my sister had. This article is very well written and I'm so thankful for the platform they've given me to raise awareness for siblings' challenges. Read More

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The Be You Collection

The goal of collections is to provide siblings an easy way to contribute to the website and make them think about their situation in a new and unique way. Siblings of children with terminal illnesses can often feel as if they are defined by their brother or sister’s experiences. The Be You Collection aims to emphasize the individual traits and interests of siblings who are often overlooked. Read More

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The Six Days I Miss You The Most

Today marks two years since you went to heaven. That number doesn’t seem real to me. It feels like just last night I was reading you “Goodnight Moon” as you drifted off to sleep. At the same time, that feels like forever ago. That’s why days like this are strange. I feel a mixture of sadness and comfort. Anger and sentimentality. All I know is that I miss you. I miss you every day, but certain days more than others. Read More

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Grey’s Presentation on Sibling Support

On Monday, February 4th, I had the opportunity to speak in front of doctors, scientists, and lysosomal disease families about sibling support. In the presentation, I share more about my journey as a sibling and my inspiration to start this website. Additionally, I go into depth about current sibling support… Read More

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The Be Positive Collection

Welcome to the newest addition to The B.L.A.I.R. Connection website, the “Be Positive” Collection. I am hoping to publish more collections in the future with different themed questions for siblings to answer. This collection aims to emphasize the positive aspect of a child’s relationship with their terminally ill… Read More

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About “The B.L.A.I.R. Connection”

The B.L.A.I.R. Connection is a support website for siblings of terminally ill children. I started this website in April of 2018, but it had already been in the making for almost a year. The Idea In the months after my sister passed away, I realized how lucky I was to… Read More

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Saving Carter

This is Sophia. Her little brother, Carter, has Sanfilippo Syndrome. Their family has been working to fund a cure to save Carter. Their campaign, Saving Carter, aims to raise $1,000,000 in one month. They have three days left to reach their goal. Please donate or share to give… Read More

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Jealousy

Jealousy. It’s a feeling that we, as the siblings of those who are terminally ill, must hide… yet we go through it all the time. When your sibling is diagnosed, you become second. Your parents stop checking your homework, what TV shows you’re watching, who your friends are. Read More

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Anniversary of the Worst Day

Today is April 4th. One year ago, my sweet sister went to heaven. This has been a year of firsts. First summer without Blair, first Halloween, first birthday, first Christmas. It has been a year of thinking about how much B impacted our lives, and how my life… Read More

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About Blair’s Sister

Hi. I’m Grey, more commonly known as Blair’s sister. I was four years old when my older sister was diagnosed with a terminal illness called Sanfilippo Syndrome. The day that Blair was diagnosed marked a new beginning, a new “normal” for my family. I don’t think my parents ever sat… Read More