Danielle's Rett Syndrome Journey

Danielle "Deedee" was diagnosed with Autism at 24 months (Sept. 2000). She had no speech, had no eye contact, ground her teeth and had stereotypic hand movements.
In November of 2005, Danielle was admitted to the hospital with sudden neurological losses. At that time she was diagnosed with Rett Syndrome. She had been struggling for 4 years with failure to thrive. It became a severe problem by April 5, 2007 when she had a G-Tube placed. From that date on she had repeated g-tube infections and sepsis 5 times. During this time we started seeing cardiac issues, temperature regulation problem, and episodes of extremely low blood pressure. August 15, 2007 she had a pacemaker placed. This controlled the Bradycardia (heart rate below 30 bpm). The blood pressure continued to be a problem. Then she started have severe apnea episodes (waking and sleeping). It was at this time they realized that her autonomic system was failing. This progressed to not being able to hold any food or g-tube feedings down. Then in January of 2008 her digestive system shut down completely. It was at this time that her heart was only beating when it was paced by the pacemaker and the apnea became a constant and her oxygen saturation began to fall even with help of oxygen. On January 29th, 2008 at 7:45 PM (EST) Danielle lost her battle, and went home to the Lord.

Category:

People & Blogs

Tags:

• Rett
• Syndrome
• RTT
• Silent
• Angel
• disorder
• Autism
• Autonomic
• system
• failure

[roxynikko2]

Was Danielle placed in Hospice or did she pass away in the hospital? Just wondering. It's so sad and heart breaking to see a little girls life end at such a tender age. Sorry for your loss!

[MyRettAngel]

@roxynikko2 She spent the last 11 days in hospice. She was loved so much and they kept her as comfortable as they could. I look at is not as a loss but as a gain of 9 years with a wonderful little girl.

[brownsik]

Dear MyRettAngel, Thank you so much for sharing your story with the world. Based on your video it appeared that January 29th, 2008 at 7:45 PM (EST) that Danielle won Victory over Rett's Disorder. Today, she is up in heaven with the Lord God Almighty running around playing and rejoicing with the angels. May the Lord Bless and keep you and your family.

[AMCKEJB3]

im so sorry for your loss she was a beautiful little girl

[horselover55able]

She looks like an actual doll (that's good)

[L4zy1]

She looks like a beautiful angel :)

4:39 I am mad too :(

[kellyfan25]

I'm so sorry for your loss. God bless you.

[shannonm75]

@habanerat Sorry I replied to you and not the other person I was supposed to. But yeah it's not fair.

[IAM18YEARSOLDANDOVER]

If God really cared He wouldn't have given this girl Rett Syndrome in the FIRST place.

[IAM18YEARSOLDANDOVER]

@shannonm75 The Bible is bullshit.

[habanerat]

Not fair! :(