Grey Chapin
Patient Worthy Partnership
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...
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Sofia Marques
- Mar 14, 2019
Inspired – the story of a sibling from Portugal
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...
Leslie Urdaneta
- Mar 9, 2019
Like a Rock in Your Pocket
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...
Beckham O'Neill
- Feb 23, 2019
Go Higher
One gene One cell One little mishap One gone wrong None goes well The disease The struggle Come together Make their lives For the better...
Jan Ballbè Perés
- Feb 17, 2019
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...
Grey Chapin
- Feb 10, 2019
How is Ellie?
This piece is by Stefanie Boyce, mother of Ellie, Jayden, & Brooklyn. Jayden & Brooklyn passed away due to Sanfilippo Syndrome and Ellie...
Grey Chapin
- Feb 8, 2019
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...
Outside Source
- Jan 26, 2019
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...
Grey Chapin
- Jan 7, 2019
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...
Grey Chapin
- Jan 7, 2019
Favorite Memory
What is your favorite memory with your sibling? 1st question of the ‘Be Positive‘ Collection Sophia Sarkar: My favorite memory with...
Grey Chapin
- Jan 7, 2019
Favorite Activity
What is/was your favorite activity to do with your sibling? 2nd question of the ‘Be Positive‘ Collection Sophia Sarkar: I love to run...
Grey Chapin
- Jan 7, 2019
Favorite Place
What is/was your favorite place to go with your sibling? 3rd question of the ‘Be Positive‘ Collection Sophia Sarkar: Disney World is my...
Grey Chapin
- Jan 7, 2019
Favorite Movie & Book
What is/was your favorite show or movie to watch with your sibling? Book to read? 4th question of the ‘Be Positive’ Collection Sophia...
Grey Chapin
- Jan 7, 2019
How My Sibling Changed Me
In what ways did your sibling change you for the better? 5th question of the ‘Be Positive‘ Collection Sophia Sarkar: Having Carter as my...
Izzy Siedman
- Jan 1, 2019
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...
Grey Chapin
- Nov 29, 2018
National Caregiver Month: Grace
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...
Grey Chapin
- Nov 11, 2018
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...
Outside Source
- Oct 28, 2018
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...
Izzy Siedman
- Sep 23, 2018
11.12.07
I peered over the sloping back of the couch, vision divided between peacock patterned fabric and white doorway. My mother blindly cupped...
Jax Koch
- Aug 5, 2018
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,...
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