Due to the Coronavirus, many have been social distancing for weeks now. Staying home is much more critical for kids like Seth, who has Sanfilippo Syndrome. Here's how the Karlsons' lives have changed because of the Coronavirus - and why you should stay home for Seth. Read More
Now that my sister is gone, photos are one of the main ways I feel that I can connect with her. Whenever I’m missing Blair, I look through old photos and memories. I find it healing to edit photos of us creatively to be symbolic and make it feel new. Here are some of those edits. Read More
For siblings of the terminally ill, school can be a place of relief or reminders. It can be a distraction from your home life, but it can also make you feel alone. My main goal for The B.L.A.I.R. Connection in 2020 was to be more real, so here it goes. Read More
You may not know that President George W. Bush, like us, is a super sibling. His sister died from Leukemia at age three. Over MLK weekend, the Bush family was at my family's favorite vacation spot and I decided to ask him for an interview on my new podcast. I walked up to the former president, my heart pounding, and pitched him my idea. Read More
What happens when the siblings of kids with the same terminal illness meet? I can say from experience, it’s awesome. No matter your age or interests, you immediately become best friends. At this year's MPS Conference, I had the opportunity to meet several siblings. Read More
On December 21st, I started my mission to go viral. I posted daily for the next two weeks, and while I’m not viral yet, I wanted to share some of the videos I’ve been posting and the progress that I’ve made. Read More
Happy New Year! It’s officially 2020, and while thinking of my personal resolutions, this website is a significant part. This year, I hope to continue growing The B.L.A.I.R. Connection and helping more siblings. 2018 was a year of brainstorming, creating, and testing... Read More
On December 20th, I had the opportunity to speak to MPS siblings from all over the country. I discussed my journey as a sibling, my fundraising, the website, and my regrets about certain blogs. Read More
One of the hardest parts about losing a loved one is the wondering. Today would be my sister’s 18th birthday, but ever since she passed away in 2017… I’ve wondered what her life would have been. I created three versions of 18-year-old Blair, you can read them below. Read More
A Blair that knows what she wants and loves to tell stories. Read More
A Blair that is in love with animals and her family. Read More
A Blair that goes with the flow and loves to make connections. Read More
I've always had a love for music. Blair had this love for songs as well. Some of her last words were song lyrics. Now that Blair is gone, there are certain songs that remind me of her. Each of these songs has a special connection to B. Read More
For this blog, I will be sharing a poll conducted by my website for siblings and the public alike. The poll asked different questions about siblings’ emotions. Read More
Making Your Sibling Laugh Read More
Hugging Your Sibling Read More
Helping Your Sibling Read More
A few weeks ago, I had the opportunity to be an exhibitor at the Child Life Conference in Orlando. I got to meet several Child Life Specialists and tell them about sibling support. After sharing my website with them, I asked each Child Life Specialist to write a message of… Read More
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
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
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
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
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
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
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
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
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
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
Be You: Section 1 Read More
Be You: Section 2 Read More
Be You: Section 3 Read More
Be You: Section 4 Read More
Be You: Section 5 Read More
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
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
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
Be Positive Collection: Question One Read More
Be Positive Collection: Question Two Read More
Be Positive Collection: Question Three Read More
Be Positive Collection: Question Four Read More
Be Positive Collection: Question Five Read More
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
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
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
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