Wednesday, August 24, 2011
Awareness… why the lack hurts so bad - Awareness Week Blog by Penny Rorrer
Why are we battling so hard to raise Awareness of the different Digestive Tract Paralysis conditions?
We are battling for the Caldwells… a young Military family in Mississippi who has been through an absolute nightmare because lack of Awareness within the Department of Human services and with a Pediatrician ripped their family apart when they were accused of not feeding their child when, in truth, their sweet little boy has Gastroparesis which was diagnosed with a Gastric Emptying Scan. Why, if it was diagnosed, are they still being accused? Because the Pediatrician that the Department of Human Services insisted they use ignored the diet and recommendations from the specialist that diagnosed him and told the parents to take him off the blended food diet and Pediasure™ and when they did he lost weight and he was taken away. They are still fighting to get him back…
We are battling because a lack of a cure has cost us yet another beautiful person, Julianne (Jules) McLaren passed from our world but not our hearts on Friday, August 19, 2011… the first day of G-PACT’s Digestive Tract Paralysis Awareness Week. Jules always had a smile and a hug for everyone and anyone no matter how bad she was feeling and the world needed her. Her Husband and her children need her, but the lack of a cure ripped her away from all of us.
The lack of Awareness is causing untold pain… it is not just that sometimes it feels like we just can’t get people to care about something that is not happening to them but it is that the lack of Awareness is ripping away pieces of our hearts.
Awareness has to happen to prevent tragedies like the situation the Caldwells are facing…
Awareness has to happen so public pressure is put on Governments to fund research into better treatments and a cure… without the Public getting involved and letting the elected Politicians know that this is important to them the Politicians will not take notice and will not care because their main focus is getting votes and keeping in office.
The DTP Family is suffering today… not just physically but emotionally as well.
You CAN make a difference!!!
Want to know more about Digestive Tract Paralysis conditions, ask us!!! We will be more than willing to share all we know with you.
Contact your Politicians (a list can be found on G-PACT’s facebook page at www.facebook.com/GPACT) and ask them why more isn’t being done.
The only way you can fail to help is by failing to try.
I know that this is supposed to be about how my life is with Digestive Tract Paralysis and my personal story… but this IS how my life is… it is suffering from a lack of Awareness and the emotional pain that comes with it.