Sunday, June 16, 2013

A Small Act Will Make a Huge Difference

My 4 year old niece has a rare disease called ROHHAD, which stands for Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation.  There are only about 75 reported cases in the world.  My sister-in-law has been the one oftentimes educating the doctors.  Fortunately, they persevered and didn't listen to the first few doctors they had who tried to tell them it was something they were doing or something they were feeding her.  They have spent lots of time either traveling to hospitals, spending time in the hospitals, or waiting for test results.  The disease has sent them around the country searching for answers.  Now they're in Baltimore for intensive treatment at Johns Hopkins.  The decision for the treatment didn't come easily, but they believe it is best.  The Bible verse that gets them through this is Hebrews 6:19, "Hope anchors the soul."  They also pray to St. Anne. 

It's my sister-in-law's quest to make more people aware of this disease.  They've been through a lot and could use your prayers and support.  They have great hope that the treatment and care they are receiving at Johns Hopkins will be what is needed to cure Reagann.

Even though you don't know Reagann or her parents Joe and B.J. and big sister Connor, please consider writing them a note to let them know they are being prayed for.  It would mean a lot as they go through this horrific ordeal.  They've been able to maintain strength through it all because of the support, prayers, and love they've gained from others.  They'll be in Baltimore until August. 

They were able to leave the hospital after 20 days.  They are now staying at the Ronald McDonald House.  Their new address is

Ronald McDonald House Charities
Reagann Duenne - Room 221
635 West Lexington Street
Baltimore, MD  21201

Really, it only takes a few minutes to write a card.  The cost is a postage stamp, but the effects will be priceless.  Let's pray her back to health and give the family our support. 

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