Finding a "Cure" would be a dream come true but in reality many babies and children are dying because families are unaware of ways to help their baby that were just diagnosed. That is what many organizations are doing funding, research for a cure. We all want a cure but how about these kids that can not even get a bipap or parents are not told there are noninvasive ways to save your child, The letters I receive from parents, aunts and uncles hurt my heart knowing how these parents struggle to get what they need to help these babies/children survive. .We need to take care of the kids that are here and are living NOW!!. Many doctors nation wide do not think parents have what it takes to do the care that is needed on a daily basis. In fact, many parents and caregivers do have the" inner strength" that it takes to take care of these beautiful children. The doctors give up on many of these kids right after diagnosis. They do not research and do not know there are doctors out there like DR.Mary Schroth in Madison,WI at American Family Children's hospital. Many parents believe in their doctors and their opinions and do not research SMA. We are taught at a very early age to trust our doctors and not question them . These kids can live with proper respiratory care . That is the main thing right have diagnosis. A bipap, humidifier and pulse ox can help them get stronger. Then, to be proactive in their care. Not to give in and take the bipap off because the baby is crying. You have to remember you are saving their lives. Parents have to face also their child will need a g-tube very soon after diagnosis . A type 1 starts losing their swallow very early. Many of us also incorporate many other therapies and a special diet in the daily routine. If you want to fight to save your child's life there are ways to do so.
So, word of warning here " I am out to help save as many babies and children as I can by giving the most vital info to help these kids stay healthy ". Stay tune in 2011.
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
2 comments:
What a fantastic new years resolution! You have so much to offer the SMA community. We all thank you!
You go, Jeanna! You have already done so much for so many. You are the first one I call when I have questions about Drew's care. Thanks for being there for all of us!
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