The Beginning of a Princess’ Story
Chandra is an 11 year old loving, caring, happy little angel. She has a 18 year old brother (Zach) a 16 year old sister (Jade) and a 23 year old step-sister (Jen). Her health issues started right after she was born. She was flown from Sterling, CO to Denver for Neurological issues and seizures. At the age of one, Chandra was diagnosed with Hypertrophic Cardiomyopathy (an enlarged heart). She was on medication after medication. She constantly was sick with pneumonia and bronchitis as well as chronic ear infections that led to her needing several sets of tubes being put in. She had her tonsils and her adenoids removed as well as her lingual tonsils. We were going to Denver several times a month.
Just a short time later we were referred to genetics where we then found out Chandra has Noonan Syndrome (https://en.m.wikipedia.org/wiki/Noonan_syndrome).
She fought like a ROCKSTAR for 6 years but her heart would not last. We were then put on the transplant list at Children’s Hospital in Aurora, CO. One of the requirements to be on this list was that you had to live within an hour of the hospital. We lived over 2 hours away in Sterling, CO. So, Chandra and myself had to leave my husband and my 2 other children to live at Brent’s Place near the hospital. They would come up on weekends to visit. We lived here for 6 months until flu season was outrageous and we then had to move to the Ronald McDonald House. We stayed here for another 6 months and then decided to rent a house so the kids had a place to run around and play as well as have their own rooms.
A month after we moved in (April 4, 2011 also her brothers birthday) we got “the call”. “We have a heart, get here as soon as you can !” I called my husband in Sterling. He got the kids to a sitter and he headed up here.
All went well with the transplant but other problems would pop up along the way. She was diagnosed with a Blood disorder (Von Wellebrand disease https://en.m.wikipedia.org/wiki/Von_Willebrand_disease), sleep apnea, hearing loss (so she wears hearing aids), warts on her face and body, excessive gum tissue (so she will need to have some removed eventually), decayed teeth due to medicines, allergies, cysts on her toe and now Cancer!
Chandra had started complaining of thigh pain on a Monday, and being parents of 3 children, we thought it would eventually go away. By Wednesday it was still there and intensified so I made a Dr’s appointment. They took xrays and we went home. On Wednesday night the doc called and said to take her in for a MRI Thursday because it looks like she has a fracture in her femur. Thursday morning Chandra woke up with a bump on her forehead, it just appeared over night! It turned out to be a tumor. After the MRI, we left the hospital and Chandra was hurting so bad, we went straight to the ER. After about 3 hrs of waiting, they wanted more tests done. She got admitted to the hospital and after a couple days, we were told she has PTLD (post transplant lympho disease).
Chandra has survived and has handled all this like a champ! She fishes, swims, walks her dog, plays with family and friends and just has a good time, when she is not to sick.
When she grows up she wants to be a Vet or a Teacher. She loves, and I mean LOVES her dog Chewy!
She has been so strong through everything and adapts to anything that comes her way.
She is a “Fighting Angel” even though her battle is not over.
Although she courageously continues to battle all her medical issues , she will require medical attention the rest of her life.
– See more at: https://www.miracleparty.org/chandra-barnes/#sthash.DpDiUbN4.dpuf