When you and your partner start deciding to have children, your mind may start to dream up all of the different scenarios and directions your life may take you. The one thing you probably never dream up is what life would be like with a child with a disability. Read More
Due to the Coronavirus, many have been social distancing for months now. We take this seriously for kids like Haidyn, with Sanfilippo Syndrome. While we may not be required to stay home anymore, I will keep sharing the stories of Sanfilippo families like mine as a reminder to do your part and be cautious for the sake of others. Here's why you should do your part for Haidyn. Read More
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
I had the pleasure of sitting down with the Outreach Coordinator of CPN for an interview a few months ago. We compared our journeys of turning pain into passion and discussed the feelings of “super siblings”. Today, Courageous Parents Network posted the podcast in honor of National Siblings Day. Read More
Due to the Coronavirus, many have been social distancing for weeks now. Staying home is much more critical for kids like Will, who has Sanfilippo Syndrome. Here's how the Byers' lives have changed because of the Coronavirus - and why you should stay home for Will. Read More
Due to the Coronavirus, many have been social distancing for weeks now. Staying home is much more critical for kids like Carter, who has Sanfilippo Syndrome. Here's how the Sarkar's lives have changed because of the Coronavirus - and why you should stay home for Carter. Read More
If I don’t have a topic in mind when it’s time to write a column, I read articles. I look into the lives of other siblings of special needs individuals, delving into the struggles, pains, and joys of their respective experiences. From this, I usually find something that I can relate to in my own life, and I let the writing guide me to my own ideas. 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
It’s been a while since I’ve had what I consider a “depressive episode.” I had one this week. I lacked motivation to do anything, go anywhere, or be around anyone for a while. Every bit of stress and each unanswered question about my life were at the forefront of my mind. When a wave of sadness hits like that, it holds me captive. 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
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. 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
Growing up with a special-needs sibling, as I’ve mentioned previously, was (and is) difficult. Read More
Blair had a big posse, and she was Queen B. Everyone who knew her happily bent over backwards to see her smile. If you could sing “Three Green and Speckled Frogs” in the exact way she liked it, like I could, she would let out a loud belly laugh that would have you smiling for hours. Read More
One significant aspect of Sanfilippo syndrome is its life expectancy — many of those with the disease don’t live beyond the age of 20. My sister, Abby, is a special case. She turned 24 in August, so she’s much older than most of the Sanfilippo kiddos we know. 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
As a MPS sibling there is one thing that we all experience: hospitals. During my brother’s twenty years of life, he spent a lot of time in and out of hospitals but there is one time in particular that always comes to mind. I'm pretty sure I was about 11 years old, making my brother 16. He had gotten incredibly sick with pneumonia and was taken to the hospital. In fact, it had gotten so bad that the hospital had to airlift him to UNC Chapel Hill. As a younger sibling, I just remember feeling so scared and lost. 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
I have always felt so much love and support in every aspect of my life. They say that your friends are the family you get to choose, and I am so lucky I chose the best sister in the world. 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
Rebecca is big sister to 10-year-old Amanda who suffers from a rare form of epilepsy. The family travels far from home with assistance from Miracle Flights, the nation’s leading nonprofit flight organization, to reach the specialized care she needs to get well. 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
The following podcast was published by Courageous Parents Network, a destination created by parents, for parents, to support, guide and strengthen families as they care for a seriously ill child. CPN has several blogs about siblings and this podcast includes two siblings talking about having a brother affected by Cerebral Palsy. 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
I am excited to announce that The B.L.A.I.R. Connection has recently partnered with Patient Worthy. Patient Worthy is a rare disease news website that posts ten new articles each day. We have partnered in a combined effort to raise awareness for rare diseases and siblings' challenges. Read More
Hello, my name is Sofia and I'm 10 years old. I'm from Portugal and I'm learning English. I have a sister named Joana, she is 15 years old and suffers from a rare disease called Sanfilippo syndrome. My favorite place to go with her is the beach, especially in the summer, because we spend the whole day there and days are sooo long in summer! Read More
Looking at the world of rare diseases and serious illnesses in children, so much of the focus jumps to the child with the diagnosis, and then to the parents. This isn’t intentional, it’s just the way it seems to work. Bit by bit, it’s easy for siblings to slip into the sidelines, away from the “front and center” of the attention that comes with a difficult diagnosis. Read More
Soy Jan Ballbè Perés y en casa vivimos mi madre, su marido, los dos hijos de su marido, los tres que somos hijos de mi madre y la Ivet la niña que tuvieron mi madre y su marido. Recuerdo perfectamente el dia de reyes de hace unos cuatro años… Read More
This piece is by Stefanie Boyce, mother of Ellie, Jayden, & Brooklyn. Jayden & Brooklyn passed away due to Sanfilippo Syndrome and Ellie is six years old, unaffected, and coping with the loss of her brother and sister. Your face changes when you ask me how Ellie is doing. I’m not sure if it’s because she’s so young, because it’s the easiest question to ask out of a sea of difficult ones, or because you are generally curious. How does a little six-year-old as bright and full of life as Ellie handle her brother and sister dying? 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
If you attend a conference of rare disease families, you might not even notice that many of those who are helping out with all aspects of making sure that everything is running smoothly are the siblings of those who have rare diseases, or the siblings of their parents. This doesn’t… 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
As November, which is National Caregiver Month, is coming to an end, I’d like to share this guest blog post written by one of Blair’s old caregivers. -Grey I met Blair Chapin in January of 2015. I began to love Blair Chapin in January of 2015. I… 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 passage is from an article in The Globe and Mail. It is written by Jessica Mason, whose sister, Elisa, passed away due to Sanfilippo Syndrome. My sister Elisa was in a hurry to come into this world. My dad ran two red lights getting her to the… Read More
My name is Jax Koch and I have a special needs brother with Sanfilippo Syndrome. His name is Alex. We live outside of Nashville, Tennessee. He was diagnosed when he was 10 years old in 2013. He just turned 15 this March. He is my only sibling. He… 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
Although today is about celebrating cancer survival, it is hard not to look back on the lives that cancer has taken. Between now and the last time we celebrated National Cancer Survivor Day, 90,000 children have lost their lives to cancer throughout world. That is a fact that held little… Read More
I am a child of luck. My older brother Ben was diagnosed with a rare terminal genetic disorder before I was born. My mom had once dreamed of having a big family, but knowing what she did about her genes, she and my dad only took that chance… 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