Taking a chance for Cyrus

I am a real life rez mama. Born and raised Little Black River Full Blood Ojibway girl.  This is where I grew up. Where I experienced almost all my greatest life moments and most of my happiest and saddest times. This is where I grew up and became the person that I am today. The place where I want to raise my children. The place where all my hopes and dreams live and play inside my mind and heart. I could be so happy here for all the rest of my years.

Now there has been dilemma. Life and Health matters have always been hanging above my family since our son Cyrus was born. He was born Achondroplasia which is the most common type of dwarfism in the world. He was also born with a undiagnosed seizure disorder he has lived with since he was 3 months old. He has had other numerous health problems since he was a baby and has been on 2 seizure medications for more then half his life. We have been back and forth from the Children’s hospital of Winnipeg numerous times over the past 4 years of Cy’s life.

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It hasn’t been easy trying to raise a high needs child in the reserve. We are 2 hours away from Winnipeg and half hour from the nearest emergency room in Pine Falls.The basic health services that should be available for my son are not readily available here in our community. There have been many appointments we have missed and have rescheduled due to transportation. We don’t have a vehicle at all times to get him to these appointments and have to ask for rides. We have been using the transportation services out here in Black. But we are not always on good terms with the people that work for the Health Centre. There are so many unfair policies that these places have in place just because we live on reservation.They throw it in our faces every time we get into a transportation disagreement with the coordinator and Health Director. First Nations and Inuit Health also don’t make it any easier when they give these reserve run organizations all these rules and limited budgets to work with. These organizations are supposed to be for the benefit of the patient which doesn’t happen living out here for Cyrus.

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This is the dilemma in my heart. Keep on living a life out here in Black River and see how things continue to unfold. Or take a chance and try move out of Black River and see what the world has to offer to our son Cyrus. Its always been this way. All those times that he would get so sick and would end up in PICU. All those times we said we would move for his benefit. But we never acted on it. He would get better for awhile and things would seem to be alright then not too long then he would be sick again with chest infections. All those times in Winnipeg especially the 3 times he did end up in PICU being there for those long periods of time would put us financially in the hole. We would be happy when he was discharged only to come back home to a pile of bills and the same old problems with the Health Centre.

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I am at a point in our lives where I am so tired of fighting. Fighting for what to get a 60 dollar gas slip to a MRI appointment in Winnipeg. To be given a hard time trying to make my son’s health a priority and to try make his life as comfortable as possible. We are very fortunate to have had some support especially from my papa Oliver and Kathleen (Kat) his partner and some very generous friends. People that have really taken care of us and loved us through all of our hard times. They have taken us to Cy’s medical appointments and helped us out financially throughout all of Cy’s hospital stays. Ronald McDonald House Manitoba is another one that has helped us out while we have stayed for long periods of time when Cy was sick. If it had not been for this organization the hospital would have ate up all our money. These have been 2 of my family’s saving grace while in hospital.

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                                        (Our boys in our room at Ronald McDonald House)

We are in the process now of trying to move from Black River. A person can only take so much and handle so much. Its not been easy raising my son in our community. I have fought so many times and I am tired of struggling to try get my son the right health care he truly deserves. Life should not have to be so hard for someone so little and so innocent.

We now have a new addition to our family. A little girl. We honestly try to be the best parents and yes we have made mistakes but who doesn’t. We are trying to our best now to get Cy our of Black River and closer to Winnipeg. Selkirk is half hour away from Winnipeg and would be ideal for us to live because Chris grew up there. Its where his family lives and works. And he has lots of friends there. We have set up a go fund me page and are praying for a miracle that we can get out of here by the end of August. Now is the time to make a change and changes are not easy especially when you have little ones. This is the most adult decision that I was so scared to make. But Cyrus is so worth it. I know once we move he will have better access to health care and other activities that can help him with his mobility.

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Please feel free to email me at mrs.s.bakosti@outlook.com

Check out our gofundme campaign Help us move closer to Children’s

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