At Rancho Mirage, California
I was diagnosed with LOPD 6 years ago at age 62...I was hired by The Home Depot almost 3 years ago, (I now work at the Rancho Mirage, California location) and, at the time, did not share any details of my condition (passing off as the slow moving old guy!)...in recent months I've shared more of my situation as the disease progresses..I feel fortunate to be working for a company that cares about its people and the community at large..a recent example is last month I was faced with a move that was overwhelming (just from a physical/ logistical sense. My supervisor asked if I'ld be receptive to help and I quickly responded, "yes please!"...on the big day they moved all the heavy furniture and many heavy boxes which reduced the stress greatly.
As a former contractor I get a lot of satisfaction helping people
with their various projects and, while I'm shuffling around these aisles
even more slowly now..and heavily dependent on my "go-back" (returned
merchandise) shopping cart (aka walker), I hope to continue as long as I
can.
God bless everyone reading this and those you love❤️.
Jack Enzler
Happy International Pompe Day from the Acropolis of Athens (Greece). The Acropolis of Athens and its monuments are universal symbols of the classical spirit and civilization and form the greatest architectural and artistic complex bequeathed by Greek Antiquity to the world.
My name is Penny, I am 51 years old and I have been diagnosed since 2002 because of my brother who also has Pompe.
I want to say that I am so grateful being a part of Pompe community all over the world. I found a new family who supports me and shares with me the latest insights into Pompe diagnostics and treatments.
Thank you all Pompe warriors for your stories and experiences, your feedback, your answers and guidance, your love and compassion, your emotional support and inspiration that helped me be a survivor for about 20 challenging years without any treatment.
Hello there!
This is our wonderful Samuel from Worcestershire, England who is 15 months old. Sam has been diagnosed with Infantile Pompe Disease two months ago and receiving his Enzyme Replacement Therapy at Birmingham Children's Hospital as an inpatient. Due to the late diagnosis, his Pompe is irreversibly progressed in his skeletal muscles, breathing and swallowing but his heart size has improved slightly since his treatment began. We are yet to go home since his diagnosis and unsure when that will be, but we can't wait to make up for lost time over the covid lockdowns and make some new, precious memories with Sam, our family and friends during what's left of his short life. Wishing every parent going through similar circumstances all the love in the world, as we understand the heartbreak and devastation you must be feeling.
Graham, Harriette and Little Samuel x x x