To help pay for Manuel's last wish

Manuel is the youngest child of 6. He was born August 15th 2006. He was a very quiet baby. His development was completely normal for one year. He brought a lot of joy to the family. After he turned one it was clear that something wasn't was right. Manuel visited a doctor when he was 18 months old. The doctor gave the diagnosis of Duchenne Muscular Dystrophy. From that day the Family lives changed. He had to visit a lot of different doctors as multiple organs are affected. At the age of 6 Manuel went to first grade, he fell a lot and couldn't get back up, lots of kids laughed at him as they didn't understand. Manuel was always patient and he hoped thing would turn out for the better. He got excited and very happy about every accomplishment. He struggled walking up and down the stairs, but he was always very proud afterwards.

Till 10 years he never lost hope.

Manuel participated in experimental studies in Winnipeg. The family tried everything to change Manuel's life to the better. Turning 10 years changed his life drastically, in came the wheelchair. He was only able to walk short distance and even there he needed help. At the age of 12 his feet deformed and he was no longer able to stand on his own. His body weakens each day. Every year he goes to Winnipeg for a sleeping study, his breathing gets irregular and the doctors are saying he could stop breathing at any time. Manuel's mother is alone with him all day, through the medication he has to take he gained a lot of weight it puts a lot of strain on her. She barely sleeps at night when Manuel's father is away on a trucking tour as she's scared, he'll stop breathing. Manuel's father is a heavy semi-truck driver and rarely home. Since 2020 Manuel rarely ever leaves his bed. His body is very weak and sitting in a wheelchair is very uncomfortable and hard for him. He is unable to move his hands or feet. He needs help eating, scratching his nose, going to the bathroom, sitting himself up again, he needs pillows on both sides so he doesn't fall over or off of the bed. He is completely depending on his mother for help. Little things that we do each day and not think about like blowing our nose, he needs help with that. Sleeping he sleeps on his back and cannot turn on his side. Manuel use to be very good with small motor skills like building Lego. He has a huge collection in his room, he loved it. Manuel was a very active child. We can't travel with him as he needs a lift to get into and out of the bed. He currently has two lifts, one in his bedroom and one in the bathroom so he can take baths. Till the 8th grade Manuel visited school in person, now he has school online. His classmates all loved him, he was always generous, friendly and a very happy boy.

As mentioned above Manuel's father is a heavy semi-truck driver. To be able to spend more time with his son he is planning on quitting his job to spend as much time with Manuel as he can. Over the years he accumulated debt through trucking and getting all the equipment needed to make Manuel's life a little bit more comfortable, and for him to be able to stay at home and look for a different job he needs to pay off his debt first. Selling the house is not an option as it is fitted for Manuel's needs. He has lifts in his room and bathroom and a ramp to get in and out of the house and wide doors. It's a struggle to keep up with all the Winnipeg appointments with his father not always being around and having a very unreliable vehicle.

It's the most difficult thing seeing him struggle all these years. The Family received a note from the doctors saying that Manuel will not make it to the age of 18. Manuel has been assigned a designated doctor who conducts home visits.

During her visit on November 21st she asked him a number of serious and hard questions. 

Manuel now has to decide on what to do. 

She asked: "If your heart stops, do you want resuscitation?" If his answer is "Yes", the doctors will do everything possible to keep him alive. That could mean he will end up being hooked up to machines. He will have breathing tubes and possibly a  tracheotomy. He will be moved to the Winnipeg hospital and won't be able to come back home. If he answers "No", the doctors will keep him comfortable at home and palliative care will take over. This option would mean DNR. The doctor needs verbal consent from Manuel. This is not easy for him nor us. 

The doctor also told us that in the case of his health not declining as rapidly, we may have a year maybe two left with him. Alternatively, it could also all end in just a couple of months. We don't know for sure.

Please donate and help support Our family. Any size of donation is very much appreciated.