Ellen T.
Wisconsin
Birth Date - November 1, 2001
Main Diagnosis - Ehlers Danlos Syndrome, Autonomic Neuropathy, Dysautanomia
THEME: Girls being Girls
Ellen's Story
Ellen has Dysautonomia, Autonomic Neuropathy, Functional Abdominal Pain Periumbilical, Ehlers Danlos Syndrome, Chronic Psdu Intestinal Obstruction with cecostomy , Sleep Disorder, ADHD and an Anxiety Disorder. She has been struggling her entire life...from her first breath (her lungs collapsed) to present day....her health has given her huge issues. Ellen was been welcomed in to the Beads of Courage Program and currently has 22 FEET of beads telling her personal story! That shows how much this kiddo has been through in her lifetime!!!! Most recently after an emergency situation involving her cecostomy (a tube that is permanently placed in her abdomen) which required surgery, a 7 day stay at Children's Hospital and months of recovery. She has never fully recovered from the shock to her system...and her health issues magnified at that time.
She has missed the last year and a half of school. They placed her in Special Ed with OHI (other health impairment) this year. Her diagnosis is life long, there is no cure....only treatment possibilities. We have been working closely with our local pediatric department as well as multiple doctors at Children's to find a treatment plan that is effective. We have not been successful at this time.
Ellen has a great deal of pain on a daily basis ...both belly and legs. We are also in the process of DNA testing and blood tests that rule out blood clotting disorders that are common with Ehlers Danlos that can be very serious. She has been removed from all physical activities that have to do with running. She is beginning physical therapy this summer. She wears a brace on her leg. All she wants to be is a normal little girl.
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"Thank You"
"Thank you Love Quilts for sending each of the kids BEAUTIFUL quilts! Ellen couldn't wait to make her bed this afternoon with her new addition!!!!! She loves all the happy little girls! The stitching is amazing! What love!!!!!!"
