Support Zephyr's Journey with Muscular Dystrophy

Hi My name is Maureen, I'm Zephyr Elli Robb's Mom. Our family appreciates all of you for allowing us to reach out for your support.

Zephyr, 38 years old and a mother or two, suffers from Udd Myopathy, a distal Muscular Dystrophy that results in a progressive muscular degeneration. She was diagnosed after testing and a muscular biopsy at the Mayo clinic in 2017 and the weakness in the muscles in her hands and feet continues to progress. While there is no cure at the moment, research is being done at the University Hospital in Finland by Dr. Bjarne Udd, the doctor who discovered the gene responsible for this disease.

Zephyr's dad suffered from myopathy but due to a lack of research he was misdiagnosed and he died at 48 years young when Zephyr was 12 years old.

We believe that our life in Costa Rica is benefiting her health and well being and prolonging her life with a clean and healthy lifestyle. It is very important to us to do everything possible that will give her and her family the best possible life and to continue the research for her and all those that have this genetic disease.

We leave November 10, 2024 for her surgery at Tempere University Hospital with Dr. Udd and his team in Finland. We are raising funds to help with the costs of biopsy surgery, hospital fees, flights and lodging for 10 days.

We will document the experience along the way which we also think will help bring awareness to this autoimmune disease. If you or anyone you know has Muscular Dystrophy, we want you to know that you are not alone and that we are going through this discovery process together.

We understand that not everyone can donate. Every little bit adds up including your prayers and steadfast beliefs that Zephyr can heal and be successful in facing this challenge. For all of this we are full of gratitude to you.

Thank you and be well,

Maureen Shillington