Kristen Elsos Brantner
I would like to introduce 2 young members of this Sammamish community and shed a little light on the rough journey they have ahead of them. They say it takes a village, I must take this opportunity on HPS Awareness Day to share our story as far and wide as it will go…
Hermansky-Pudlak Syndrome (HPS) is a 1 in a Million Rare Disorder, affecting multiple organs in the body. It is characterized by Albinism- lack of pigment, Visual impairment- legal blindness & sensitivity to light, Bleeding/Platelet dysfunction, Colitis- inflammation & bleeding in the digestive track and they will develop Pulmonary Fibrosis- their lungs will scar and fail them; they will need a Lung Transplant…
As of now there is No Cure.
This does not define us; however, our everyday decisions and actions are dictated by HPS- their visual needs, safety and health. The need to change the future for my children drives me to go beyond my comfort zone, to put my heart on the line, to publicly ask for support. A desperate mom will do anything! Our family embraces this challenge and we do everything we can to advocate for and with our children. They are sweet, fun, caring kiddos!
We keep a positive, optimistic attitude and teach our kiddos to be proud of who they are! They teach us what true strength is.
I have grown up in Sammamish, attended all the local schools and came back here to raise my family. While I have tried to be as open as I can with those who know us well, I feel it will take more than that, I know it will take sharing our story with anyone who will listen!
How can you help? Share our story! If you find yourself looking for an organization to make a charitable donation- please consider the HPS Network (a 501c3 nonprofit organization) HPSnetwork.org
I think you were looking for this link
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