Our Stories
Healthier Children. A Better World.™
Our Kids - Meet Manuel
As a single mother in Colombia, Marcela wished for a good life for her son Manuel and believed she could give it to him by moving to Canada.
At the age of three months Manuel had been diagnosed with neurofibromatosis1, (NF1) a genetic disorder of the nervous system. A common complication of this disease is scoliosis and tumours that can form on the nerves anywhere in the body.
Manuel, Neurofibromatosis
When they left Columbia, Manuel was doing well, however, Marcela knew that she would need help when she arrived in Canada. She sought out support groups for neurofibromatosis and was put in touch with the NF Society of Ontario. They were then referred to the NF Clinic at SickKids. At that time Marcela did not know what SickKids was or the pivotal role that it would play in their lives. This was just the beginning of Manuel's long lasting relationship with SickKids.
Due to the scoliosis that is a part of NF, Manuel has had an operation to have a rod inserted to align his spine that requires adjustments scheduled every six months. Manuel also wears a brace which prevents him from doing many activities he enjoyed previously with his friends. The brace has only been removed while Manuel is bathing.
Manuel has had his first adjustment in June 2003 with his second scheduled for May 2004. However, in April 2004 Manuel suddenly began screaming and feeling ill. He was taken to the local emergency room where they believed he had suffered a stroke. Manuel was sent to SickKids emergency department at 11 pm that evening.
A CT scan was performed which confirmed that an operation was necessary which lasted for 3 hours. Tissue samples that were sent to a pathologist for review, established that Manuel was not feeling the symptoms of a stroke but rather that of a bleeding brain tumour sarcoma. Sarcomas are malignant tumours that arise from connective tissue, blood vessels, or the lymph system.
Manuel was then admitted to the oncology unit at SickKids. His mother was told that it was an aggressive and uncommon tumour with a medical survival outlook of three to five years. The diagnosis was grim. Meanwhile Manuel's rod adjustment operation was put on hold.
Thankfully, the removal of the tumour was successful and Manuel underwent an aggressive cancer protocol which consisted of 31 sessions of radiation and eight sessions of chemotherapy. Manuel finished these oncology treatments at the end of March and now visits for an MRI every three months. His rod adjustment operation is scheduled for later this year.
Manuel looks forward to being old enough to undergo an innovative treatment, a fusing of his spine, which will allow him to rid of the brace that has been a part of his life for 23 hours every day. Manuel will be able to participate in many more activities and live a more active life. Although, his friends at SickKids would say that he is already active enough, especially when Manuel is in his favourite place at the hospital, Marnie's Lounge.
When Marcela was in Colombia wishing for a better life for Manuel she did not yet know about SickKids. "Now that we have experienced the care they provided for us, I am grateful to have it." She says, "This summer Manuel has already been to camp twice and his hair is growing back! Manuel is the most talkative, outgoing boy at the camp. Everybody knows him!"
HOW CAN YOU HELP?
Thousands of children like Manuel need your support. Donate Now