A message of Hope!
I am going to mention some things that have brought me glimmers of hope for the future.
1. Gene Therapy: I have a friend whose son has Spinal Muscular Atrophy. He was one of the first kids to receive the new gene therapy and it has done wonders for him. She recently posted a video of him without his breathing device, he was just munching on a cheese doodle for about an hour like a regular kid! And my heart exploded with joy for them. I have hope that our young Pompe kids might have new options for treatment just like the kids fighting SMA.
2. Medical Assist Advances: Someone posted in our Pompe community about having a diaphragmatic pacemaker for which he attributes to having his life back. He can go places without all sorts of equipment and is very pleased to breathe unencumbered.
3. Connection to Community: I live seeing all of the things people are doing to try and live their lives to the fullest. I even saw a picture of a young lady who was fishing from her wheelchair. Her family put her in waders and wheeled her right into the creek! She looked so happy, and I have to say it brought me hope.
This is a photo of my Brothers and I from who knows what year. But it has that Pompe green, and was a very nice hike, which I am losing my ability to do much of so the picture brings me hope that I can overcome things and be a part of what I love doing one way or another!
I will continue to have hope and a will to live for as long as I can but in 2019/2020 these things I can rely on for hope and cheer. THANK YOU for hearing my story.
Ellen Williams 35 ~ Pompe Disease
