My nephew Liam was born October 27, 2010 to Ian (my brother) and Ashley Edwards. Both Ian and Ashley are full-time nursing students who work full-time at Hays Medical Center in Hays, KS. They are amazing and loving parents to Liam. He has grown to be such a handsome, sweet little boy and is loved by so many family and friends.
In September/October 2012, Liam started showing signs of regression in development, physically and verbally. After seeing the pediatrician and pediatric neurologist, they arrived at the diagnosis of OMS (Opsoclonus-Myoclonus Syndrome). The next week, they went to Springfield, IL to see a specialist for Liam to receive a lumbar puncture and multiple CT scans to locate any neuroblastic tumors. He had a successful lumbar puncture, and we found out that his specialist is the only one in the United States that treats OMS patients, and that he only has 350 of them. Liam is getting daily steroid injections to reduce inflammation in his brain and nervous system, monthly infusions of IgG (good antibodies), and Retuxan (chemo that will eliminate his immune system memory). It is much more complex than this even.
In the second week of November, Liam had a port-a-cath surgically implanted for IV access for the monthly infusions. He was given a CT scan to check for tumors as well. The treatment is expected to reboot the immune system so it will stop attacking the brain. The day after the port-a-cath was implanted, Liam's hemaglobin levels fell to 3. He was examined at the hospital and the doctors found that there was blood in his stomach. He was then quickly flown to the Children's Hospital of Colorado and had rounds of tests done to see what was wrong. They found that, along with OMS, he has congenital hepatic fibrosis with characteristics of Caroli's disease. It is very rare that anyone would have one or the other in the first place, let alone both at the same time. Liam will be treated with 2 types of diuretics, possible banding of the varices, and monitored for infection and possible liver failure. However, his liver is currently functioning normally. It will be difficult for both diseases to be treated at the same time, as some medicines will not work with others in his body. They will hopefully return to Hays before Thanksgiving...just in time! His doctors in Wichita, KS, Springfield, IL, and Aurora, CO are working to come up with a solution to work with all his treatment and meds in one place.
Liam is such a fighter and deserves every ounce of care and treatment he is able to receive. His monthly infusions of IgG are extremely expensive and insurance only covers so much for his treatment. Ian and Ashley are working hard to provide everything they can and they are amazing parents to little Liam. I am asking anyone and everyone to help by making a donation toward Liam's medical care. He is such a beautiful little boy who deserves to live a beautiful life, and you all can help him on his journey to getting better!
*Every cent of donations will go to Liam and his parents for his medical care.
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