- L
- V
- J
I remember the day Mason was introduced to us. He was happy and carefree; he always had a smile on his face and was forever trying to clap everyone's hands. Unfortunately these are now just a memory. My nephew has faced major obstacles in his short life and his family needs our help. Mason has recently been diagnosed with MECP2, which is a rare genetic neurodevelopment disorder, with a life expectancy of 25 years. I hope once treatment is found for this fairly new disorder our Mason will be back. Mason was recently admitted into the RUH Hospital for pneumonia, what my sister and her husband didn't know is their lives were about to be turnt upside down. Mason had a rough week, from fluid filled lungs that kept filling up, to an unsuccessful Peg-Tube surgery (tube into stomach for nutrition), not have ability or strength to walk and being bed bound. This has caused a huge financial stain on Jason and Ashla. Jason has taken time off work to ensure Mason has someone at his side 24 hours a day. Ashla has been working between relieving Jason so he can sleep and see Asher his 2 year old son they share, visiting Mason every chance she gets, while looking after Asher and ensuring his needs are met. Mason now how has a temporary feeding tube placed through his nose and awaiting surgery for another attempt at a Peg Tube placement. This young family is faced with financial struggles as everything needs to change in their world. They need a home that is accessible to Mason, feeding supplies, and to recover lost income since Mason became sick. Jason is currently off work and once Mason comes home Ashla will be his caregiver. They need to bring Mason home to a home that is safe for him without stairs. They need our help so they can make memories with Mason in their home and ensure quality of life. Please consider helping this amazing family out and donating to Mason's Incredible Journey who knows he may out live his life expectancy with our help and support
Natasha
Here is Jason's story
Meet Mason a young man that has been through so much in his life. His journey began right at birth. Mason had many complications during his birth and spent the first 2 months in neonatal care unit. He was delivered by emergency c section and swallowed some blood and was not breathing. Although he did survive his life would never be the same. He was very sick growing up and in and out of the hospital for many reasons. Doctors could never really give us answers and when he turned 4 was diagnosed as autistic. We never felt it was right but went with it as we were tested for everything else including genetic tests. Fast forward a few years and Mason was showing improvements although still very sick and in and out of hospitals we always had hope for him. Mason was the most carefree happy kid without a worry in the world except to make sure everyone was smiling. Mason was about 10 years old when he started to experience seizures and started to deteriorate, this problem only intensified as the years went on. He started to experience all types of seizures, but the cyclonic was the worst of them. This type of seizure caused him so much grief as its total loss of control and would often do damage to his body. Currently he is suffering from approximately 40 of these a day. We have tried everything from therapy to medication and each time it would help for a bit but eventually each thing we tried would stop working. Still seeing doctors and specialists it was decided that maybe there missing something. The decision to do genetic testing again has forever changed his life and ours.
Summer of 2017 was when we received the results that he has MECP2 duplication syndrome. This has come with a life expectancy that was a bit of a shock to us, we were told Mason had a life expectancy of 25 years which is not enough for any parent to have with their child. Although we try to stay positive we still have to be real. MECP2 is a very new disorder and in 2003 when they did the first test it didn't show up. Science has changed and here we are. Approximately 200 people in the world currently suffer from this. There is a lot of unknown but what is known Mason has been dealing with since he was born. Seizures, delayed development, mobility, bowl issues are some of the known issues associated with MECP2. One of the major problems from this disorder is swallowing and aspirating into to his lungs which has caused Mason to have pneumonia several times over his years. Mason is at a point where his body is not fighting the infections like it use to.
Most recently we have again ended up in royal university hospital where things have became very real. Mason can no longer eat through the mouth due to the aspirating. A temporary feeding tube has been placed through Mason's nose to ensure he gets adequate nutrition after an unsuccessful surgery to insert a Peg Feeding tube into his stomach. This started to not looking good and what a simple trip to emergency was has turned into a long stay in the hospital with many new skills for us parents to learn. The surgery to insert Masons Peg tube will be reattempted in the weeks to come, so now we wait with our son until it is completed.
We have lost time from work and money, but that's not what's important to us. What is important to us is Mason's quality of life and caring for our special guy. Our worlds have been turned upside down and we have a long way to go. I need to work, but my wife will need to quit her job and stay home with him so he can be with his family when he needs us most. We are faced with a financial obstacle as we need to purchase feeding supplies and all necessary equipment to keep Mason at home in a safe environment. Our biggest obstacle is we need to move as our current home is not accessible for Mason. His mobility has severely declined in the last few weeks and our home is not set up for Mason with his bedroom downstairs and the kitchen and living room upstairs. We are reaching out to the world for help. My wife and I have done this for many years and have done this alone with very little help. We struggle with asking for help so this is very hard for us. We will keep Mason with us in our home and will care for him the best we can and always have. The cost of foods and supplies has supplement but not nearly enough to survive. We have struggled with funding his whole life and as a result will struggle with what's to come next. We do not own a house we rent and we need to move immediately to make masons life easier. We want to start to do more things with him as time is running out with our special guy and most of our memories are from emergency rooms and hospitals. I ask that you help us achieve these goals for Mason. We are not looking to get rich or benefit from our son's condition we just want the very best for him and in a money driven world this is often hard. I appreciate you all for reading this and if u can't give us a monetary value we understand but we ask that you at least send us love as that's what's really important hear.
Thank you and please hold everything special to you close and never let go.
Love is powerful and our family is living proof of this
Jason
Natasha
Here is Jason's story
Meet Mason a young man that has been through so much in his life. His journey began right at birth. Mason had many complications during his birth and spent the first 2 months in neonatal care unit. He was delivered by emergency c section and swallowed some blood and was not breathing. Although he did survive his life would never be the same. He was very sick growing up and in and out of the hospital for many reasons. Doctors could never really give us answers and when he turned 4 was diagnosed as autistic. We never felt it was right but went with it as we were tested for everything else including genetic tests. Fast forward a few years and Mason was showing improvements although still very sick and in and out of hospitals we always had hope for him. Mason was the most carefree happy kid without a worry in the world except to make sure everyone was smiling. Mason was about 10 years old when he started to experience seizures and started to deteriorate, this problem only intensified as the years went on. He started to experience all types of seizures, but the cyclonic was the worst of them. This type of seizure caused him so much grief as its total loss of control and would often do damage to his body. Currently he is suffering from approximately 40 of these a day. We have tried everything from therapy to medication and each time it would help for a bit but eventually each thing we tried would stop working. Still seeing doctors and specialists it was decided that maybe there missing something. The decision to do genetic testing again has forever changed his life and ours.
Summer of 2017 was when we received the results that he has MECP2 duplication syndrome. This has come with a life expectancy that was a bit of a shock to us, we were told Mason had a life expectancy of 25 years which is not enough for any parent to have with their child. Although we try to stay positive we still have to be real. MECP2 is a very new disorder and in 2003 when they did the first test it didn't show up. Science has changed and here we are. Approximately 200 people in the world currently suffer from this. There is a lot of unknown but what is known Mason has been dealing with since he was born. Seizures, delayed development, mobility, bowl issues are some of the known issues associated with MECP2. One of the major problems from this disorder is swallowing and aspirating into to his lungs which has caused Mason to have pneumonia several times over his years. Mason is at a point where his body is not fighting the infections like it use to.
Most recently we have again ended up in royal university hospital where things have became very real. Mason can no longer eat through the mouth due to the aspirating. A temporary feeding tube has been placed through Mason's nose to ensure he gets adequate nutrition after an unsuccessful surgery to insert a Peg Feeding tube into his stomach. This started to not looking good and what a simple trip to emergency was has turned into a long stay in the hospital with many new skills for us parents to learn. The surgery to insert Masons Peg tube will be reattempted in the weeks to come, so now we wait with our son until it is completed.
We have lost time from work and money, but that's not what's important to us. What is important to us is Mason's quality of life and caring for our special guy. Our worlds have been turned upside down and we have a long way to go. I need to work, but my wife will need to quit her job and stay home with him so he can be with his family when he needs us most. We are faced with a financial obstacle as we need to purchase feeding supplies and all necessary equipment to keep Mason at home in a safe environment. Our biggest obstacle is we need to move as our current home is not accessible for Mason. His mobility has severely declined in the last few weeks and our home is not set up for Mason with his bedroom downstairs and the kitchen and living room upstairs. We are reaching out to the world for help. My wife and I have done this for many years and have done this alone with very little help. We struggle with asking for help so this is very hard for us. We will keep Mason with us in our home and will care for him the best we can and always have. The cost of foods and supplies has supplement but not nearly enough to survive. We have struggled with funding his whole life and as a result will struggle with what's to come next. We do not own a house we rent and we need to move immediately to make masons life easier. We want to start to do more things with him as time is running out with our special guy and most of our memories are from emergency rooms and hospitals. I ask that you help us achieve these goals for Mason. We are not looking to get rich or benefit from our son's condition we just want the very best for him and in a money driven world this is often hard. I appreciate you all for reading this and if u can't give us a monetary value we understand but we ask that you at least send us love as that's what's really important hear.
Thank you and please hold everything special to you close and never let go.
Love is powerful and our family is living proof of this
Jason
Organizer
