Friday, May 31, 2013

ROHHAD: Kira - 9 years old - passes away :(

Dearest is with a heavy heart and sadness that I must share that one of our sweetest and dearest friends has lost her battle with ROHHAD and gained her angel wings.  I have known Kira and her family for a few years now and am blessed to have known her and had her in our life.  We will miss her but take comfort knowing she is watching over all of our babies from above.  All our love to her family.

Wednesday, May 29, 2013

Wild About Reagann

Reagann is the 4 year old daughter of Joe & BJ Duenne of Charleston. She has a very rare disease called ROHHAD Syndrome (Rapid Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation).

There are less than 100 children diagnosed in the world. There is no treatment (beyond experimental) or cure for ROHHAD and the source of the disease has not been identified. Symptoms of ROHHAD vary for each child and are usually misdiagnosed. They generally begin with rapid onset obesity in the first 2-4 years of life, followed by impairment of the nervous system and inevitably reduced lung function leaving most ROHHAD patients unable to breathe without the use of a ventilator.

Reagann will begin an experimental treatment of high dose chemotherapy (cyclophosamide) on June 7th at Johns Hopkins in Baltimore, MD where her immune system will be destroyed. Her family will live in Baltimore, MD for approximately three months while her immune system is rebooted, hopefully resistant to ROHHAD. This treatment has been performed on two other children in the world, successfully treating several symptoms of ROHHAD

LIKE Reagann on Facebook.....she needs your support!!!