On April 13, my family and friends will walk in Golden Gate Park for hope, for energy and for life. We are walking to raise funds for research for mitochondrial disease. Walking to raise awareness. Walking for more effective treatments. Walking for a cure.
It has been months since my last entry. I would like to wrap up 2012 and write our thoughts for 2013 and that entry will come soon. Right now, it is more important for me to reach out for support and donations for our upcoming walk. It has been hard for me to come up with what to write. I don’t like asking for anything and I like asking for money even less. When I start to think about it, I realize that I gain nothing from your donation. Nothing, yet, everything. I, personally, do not need a cure for mitochondrial disease. Yet, I feel like there is nothing in the world I need more. A cure means my daughter’s life. This is why I am asking without reservation and with pride. This is why I am asking you now, please donate. Why not?
Cara is doing wonderful on the ketogenic diet. Over the last 8 months she has not only regained skills she started to lose, but can babble, roll, sit with less support and is interested in exploring the world around her. For those that knew Cara before we started the diet, you know how amazing this is. There was a time where I wasn’t sure if I would ever be able to hold her on my hip and now she can sit in a toy car by herself. She still needs basic head and trunk support but she is gaining strength and control over her body very quickly. The diet has completely turned things around. As long as Cara has mito she will need to continue the diet for the rest of her life. The neurologist that is keeping tabs on her progress and maintenance while on the diet looked me in the face and with a clear voice said “This is not a cure.”
Cara, despite the neurological damage that has caused her current difficulties, is a healthy and happy 2-year-old girl. This diet is not a cure. There is still a chance that Cara will have a rapid decline in health. All it takes is one bad illness, a high fever, pneumonia, an infection or the diet is suddenly not enough. One bad illness that throws her out of ketosis, her acid level rises to levels that are difficult to control, her seizures are not manageable and her body is not able to create the energy it needs to continue. One bad illness or infection could easily mean I lose my daughter. There is no other treatment options. There is no cure.
The vast majority of children that show symptoms of mitochondrial disease at a young age to do not live past their teenage years. Many do not live to see their teenage years. The abnormal MRI that started us down this road was at 4 months. Cara is one of the lucky ones. We have the keto diet that has made a huge difference and hope and pray it continues to, but, it is not a cure.
We are happy to help Cara overcome all difficulties she will have in life due to the damage that has already been done because of this disease. We are happy to be her legs if she needs them, be her voice if she needs it, fight for her, help her live life to the fullest. We are happy to do everything we can but we can’t cure her. We can buy equipment, drive to therapy, meet with doctors, be vigilant to prevent her from getting sick. We can’t cure her.
I have a feeling that there would be more and higher donations if Cara were “sick”. That is too late. There needs to be more awareness and funding for more treatments and a cure before the fight for life. We need to enter the fight with more to fight with, or better, not ever get to that point.
I have read too many stories of those suffering from this disease that lived years, even decades, feeling full of energy and healthy only to suddenly find themselves in a wheelchair, tube fed and their bodies quickly shutting down all in a matter of months. I have read too many stories of children that seem healthy then after the flu, pneumonia or an infection take a trip to the hospital and never leave. Too many stories of too many lives lost.
This is not so much of a rare disease as it is an unknown disease. Every 30 minutes a child is born that will be diagnosed with mitochondrial disease before the age of 10. Half of those with mitochondrial disease are children who showed symptoms before the age of 5 and 80% of these children will not live to the age of 20.
The organs effected most by mitochondrial disease are the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. Mitochondria are responsible for 90% of the energy our body needs to sustain life. Mitochondrial dysfunction has been linked to autism, Alzheimer’s Dementia, Parkinson’s disease, Huntington Disease, Amyotrophic Lateral Sclerosis (ALS), deafness and blindness, diabetes, obesity, cardiovascular disease, stroke, multiple sclerosis, Sjogrens syndrome, lupus, rheumatoid arthritis and even cancer.
My daughter has a disease that is progressive, fatal, very limited in treatment options and without a cure. I don’t know what else to say to encourage you to donate. If you haven’t donated already please ask yourself: Why not? Any amount helps.
If you are in the San Francisco area, we would love for you to join our team and walk with us. If you are not in our area, you can join our team as a virtual walker and help us collect donations and spread awareness.
Please support the Carawatts as we walk for awareness. Walk for treatments. Walk for a cure. Walk for hope, energy and life.