Amy Murdza, hula-hoop extraordinaire, is a wife, a mother of 2, sister of 3 and friend to many! She has a very active life despite a silly thing called MS. She goes on walks, hikes, bike rides whenever she can because right now- she CAN! Albeit, she is not always speedy or stealthy or coordinated as many of you already know (like falling out of trees). She also continues to follow passions such as serving community through volunteering but has reduced her volunteering hours significantly since her diagnosis.
Amy has been struggling with symptoms that include nerve pain in her arms, hands, feet and legs, severe fatigue, visual deficits from optic nerve damage, and muscle spasticity in her legs, bladder and throat. This spasticity causes difficulty in walking and difficulty with controlling her bladder.
What is Multiple Sclerosis?- As one doctor recently put it “It’s a disease of great surprise. You’re never bored with this disease,” “One day you wake up and you can’t hold your urine. Another day you wake up and you’re blind in one eye.” With MS, inflammation occurs randomly around blood vessels. The inflammation heals and leaves scars, called scleroses. “It’s like an inexpert marksman closed his eyes and took a gun and shot it at the patient,” said McDougall. “And wherever that bullet hit, that part of the patient dies.”
MS is a progressive non-curable disease, SO, Amy isn’t going to wait to see what is next. She will not! She applied for a trial study that is in the third phase now that has had tremendous success and was ACCEPTED! She will eventually undergo a Hematopoietic Stem Cell Transplant (HSCT). Say what? What is a HSCT?
The transplant Amy would have is autologous, in which her own stem cells are removed, processed and then returned to the body. WHY would you want a HSCT for MS?? It’s like this. MS is believed to be a disease in which the immune system is triggered to attack the body’s own nerve cells as if they were foreign material – causing damage to the protective fatty sheath called myelin. What HSCT will do is reboot her entire immune system. She will have her immune system almost completely eliminated and then she will rebuild a new one- ideally free of MS and that will no longer be wired incorrectly to attack her central nervous system. The stem cells assist with her recovery.
Amy wants to work to normal retirement age. She doesn’t want to lose more function. She wants to dance and hula hoop and hike and play. She wants to have cognitive abilities at 100%.
Amy needs our help! This amazing treatment that can help her do all these things costs A LOT! She will have to stay in Chicago for this treatment and the transplant costs over $180,000! We aren’t sure yet what insurance will cover, but every little bit counts and is appreciated more than you know! Thank you, thank you, thank you!