Image for Cura MSD – the story of a sibling from Spain

Cura MSD – the story of a sibling from Spain

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

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How is Ellie?

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. 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 programs… Read More

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Siblings: The Unsung Heroes

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

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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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Super Dog

Grown from pure energy, clipped claws scraping on loose rocks, and damp nose searching for treats is Poppy: a compact and sleek black Labrador. Family dog and partner in outdoor exploration, the worst she could ever do is lick you, and she will if you let her. An… Read More

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National Caregiver Month

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

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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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Lives lived: Elisa Lorraine Linton

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

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I peered over the sloping back of the couch, vision divided between peacock patterned fabric and white doorway. My mother blindly cupped his greasy cheek in her prematurely wrinkled hand. She saw past so much. “Mister Ben Siedmannn, can you say mama? I’m your ma…? Ma!”… Read More

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My Brother Alex

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

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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. 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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National Cancer Survivor Day

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

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To the siblings of terminally ill children, You are loved no less, and you are trusted just that much more. You are independent and strong because you have to be. You have a special gift of communicating, a special gift of unconditional love. You are full… Read More

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Child of Luck

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

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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