A website where concerned friends and family can show their support
A website where concerned friends and family can show their support
…their child diagnosed with a rare disease. Joseph is only 14 months old and we are fighting to save his life.
Opsoclonus-myoclonus syndrome (OMS) is a paraneoplastic neurological disorder. It is characterized by associated ocular, motor, behavioral, sleep, and language disturbances. The onset is usually abrupt, often severe, and can become chronic. OMS is a rare disorder: 1 in a million individuals worldwide. The peak age in children is about 18 months. OMS occurs in about 3% of all children with neuroblastomas.
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Neuroblastoma is a cancer that develops from immature nerve cells found in several areas of the body.
Neuroblastoma most commonly arises in and around the adrenal glands, which have similar origins to nerve cells and sit atop the kidneys. Neuroblastoma can also develop in other areas of the abdomen and in the chest, neck and near the spine, where groups of nerve cells exist.
Neuroblastoma most commonly affects children age 5 or younger.
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Hospital and other medical cost are rapidly accumulating as our insurance is not covering everything. Travel costs to the medical facilities over an hour each way are also mounting. Due to the constant care and monitoring that Joseph requires, his mother is now on a leave of absence from work. When her accumulated time runs out, her salary will no longer be available to contribute to cover the costs for the future tests and treatments to come.
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Joseph is in the best hands available and is recuperating from surgery but it is a long road ahead. Along with the physical and emotional strain, there is a financial strain also. Our goal is to first educate our concerned friends about this rare condition, and secondly to request any help that you may be able to offer to Joseph.
After Joseph’s first symptoms, he received the tests required to confirm his diagonosis. Plans to determine the necessary treatment were made and surgery scheduled.
Joseph’s first surgery was on 12-18-15 was over five hours long and 95% of a mandarin orange-sized tumor was removed along with his adrenal gland.
Joseph came home from the hospital on 12-21-15 and has been prescribed Predisone. It is causing him to not sleep and affecting his behavior by giving him fits of rage.
On 12-28/29-15 he will receive a dye treatment and an MIBG scan to check his entire body for cancer. He will need MRI screenings every three months for the forseeable future.
Joseph and the entire Ziegler family appreciate your support through this difficult time. Feel free to contact us with any help you may be able to offer or to send your words of encouragement and prayers for his recovery.