Update on Lee: 2/22/15
It has been six years since Lee was diagnosed with Wilson's Disease. Six long years for him and his family. Our attempt to get Lee an apartment of his own did not work out after Lee suffered some health setbacks last year. On March 7th, 2014 he was finally referred to Prince of Peace nursing home in Ellendale, ND. Lee is a very strong and determined young man! He is working hard to function to the best of his ability. He is still on a feeding tube, but has gone from 128 lbs to 165lbs in one year and has regained some muscle tone! He is involved in a SPUR riding program in Aberdeen, SD. Lee enjoys working with the staff and the horses there. Lee and his family are very thankful for all the excellent care he receives at the Prince of Peace! The staff have treated him great and he has found purpose there. Lee has made friends with the other residents in the community. The goal is to press forward and seek a facility in a country setting that meets the needs of young disabled adults. We need one in the state badly and are working on the logistics to make it happen! Thank you for your support and prayers, we appreciate it!
Ann Marie Sims and family
Lee would love to get some mail. If you would like to send Lee a letter or card here is his address:
Prince of Peace Care Center
201 8th Street North
Ellendale, ND 58436
The generosity of friends and family in just one day has been amazing. Please keep sharing this post so we can reach as many donors as possible. I know everyone may not be able to donate, but
all your thoughts and prayers for Lee are appreciated.
Thank you, LaDonna (Lee's cousin)
Hi! Thanks for taking the time to visit. I created this donation site for my cousin, Lee Steffan. I am hoping to raise funds to cover medical expenses for Lee, as well as raise awareness of his diagnosis,Wilson's Disease. Any size donation, big or small, will be greatly appreciated. Lee Steffan grew up in Western North Dakota and had a love for horses and rodeo. Lee was a great saddle bronc rider and horse trainer until his disease got the best of him. Now he struggles to walk and uses a walker most of the time. On his good days he is able to enjoy a short horse ride with some assistance from his Aunt Vicki. Vicki, a nurse, has been helping to take care of Lee and knows that he would be able to enjoy his life more if he could get the medical attention he needs. Lee spent several years with strange symptoms that went untreated and undiagnosed due to the lack of knowledge of this disease in the medical community where he lived. Lee was diagnosed with this disease after the age of 18, so he is unable to get all the medical benefits he would have received had the doctors diagnosed him earlier. Lee is now 30 years old and when he is not in the hospital he is totally dependent on his mother or father for assistance each day. Lee's neurologic symptoms not only make it hard for him to walk, but even the simplest thing as eating can be a challenge and he often relies on a feeding tube for nutrition. With the money that is raised he will be able to afford the physical therapy treatments he needs to help regain muscle strength and coordination which will greatly contribute to improved quality of life. Lee also has past medical expenses that need to be taken care of, so donations will be used to ease the burden of those expenses also.
Here is some basic information on the disease for those of you
who are unfamiliar with this disease.... Wilson's disease is an autosomal recessive genetic disorder in which copper accumulates in tissues; this manifests as neurological or psychiatric symptoms and liver disease. It is treated with medication that reduces
copper absorption or removes the excess copper from the body, but occasionally
a liver is required. The condition is due to mutations in the Wilson's disease protein (ATP7B) gene. A
single abnormal copy of the gene is present in 1 in 100 people, who do not
develop any symptoms (they are carriers). If a child
inherits the gene from both parents, the child may develop Wilson's disease.
The main sites of copper accumulation are the liver and the brain, and consequently
liver disease and neuropsychiatric symptoms are the main features that lead to
diagnosis. About half the people with Wilson's disease have neurological or
psychiatric symptoms. Most initially have mild cognitive deterioration and
clumsiness, as well as changes in behavior. Specific neurological symptoms
usually then follow, often in the form of parkinsonism (slowed
movements and a lack of balance are the most common parkinsonian features) with
or without a typical hand tremors,
masked facial expressions, slurred speech, ataxia (lack of coordination) or dystonia (twisting and
repetitive movements of part of the body).
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