Hi, my name is Paula Larson. I’m starting this for Aubree Larson and her family. Aubree has an interesting story. She was born in South Korea. She was placed for adoption, and then adopted at age 3 (along with a biological brother) by a family in Alaska. She was raised in Anchorage. Aubree met my son (Ryan) in Illinois and they were married 2 years later. They have 3 beautiful children, ages 12, 9, & 6. Aubree’s brother died a few years back from HDLS with spheroids (hereditary diffuse leukodystrophy with spheroids). Aubree now has this same disease that took her brother’s life. This is a very rare disease, but is genetic. There is no cure. It’s 100% terminal. There is a 50% chance that each child has it as well. I’m starting this LFEBridge because Aubree’s husband is really struggling. He’s a paramedic. He works very hard to save people’s lives every day. Unfortunately, he can’t work as much as he was because he needs to be home with the family not only caring for & watching over the children, but Aubree as well. This disease is wiping out Aubree’s neurological functions. She can no longer drive. She hasn’t no long term memory and her short term memory is decreasing every day. She hasn’t got the motor skills to do a lot of things any longer. Every part of her has been affected and she continues to decline daily. The closest I can compare this to would be alzheimers (with other neurological implications as well). Because there is so little known about this disease, Aubree will be a part of a research study. We are hoping that enough will be found from the study to not only help the children, but also others that become afflicted with this horrible disease. Unfortunately, it’s to late for Aubree. Because Ryan isn’t able to work as much, he really could use some help. Help with bills, help with general expenses, help with medical that’s not covered. There are very few doctors that know about this disease. Because of that, the doctors that will see her are very far from their home in Missouri. The one they have found that will see her is actually in Florida, but he does not take their insurance. They have to put a $5,000 deposit into an account before they will even accept her as a patient. From there, they will have to pay cash as they go. If you can help, in any amount, we would appreciate it so much! As you can imagine, this is a very difficult time. We appreciate anything you could do.. even if it’s only adding Aubree and her family to your prayer list.
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