EARTH BOUND ANGEL
a healthy, active, "almost" 3 year old. She had been at the beach
just the day before, burying her self in sand and romping in the shallow water.
The next morning she awoke her grandmother saying she was thirsty. Harley and her sister live with their grandmother/guardian.
Donna went on to work, putting Harley's little sister, Nonna in her high chair and awaking her husband, Earl, who took the girls to their sitter before he went to work.
After tending to Nonna's breakfast, Earl went to wake Harley and found her lying in her own vomits and burning up with fever. Earl decided not to go to work, but to stay home with Harley.
Harley grew sicker as the day wore on. Earl called her great-grandmother to come and take her temperature, which was 101 at that time.
Earl was giving her Tylenol and bathing her in tepid baths to cool her. Harley developed diarrhea and complained of her left arm hurting her.
When Donna got home from work, Harley was lying on the living room sofa, barely conscious. Donna called me, her sister, Linda, as I am a paramedic.
Donna's first question was concerning chicken pox, since Harley had this unusual "rash" on her left arm and upper chest. After describing it to me as "looking as if she had rubbed her skin over concrete", I told her that wasn't chicken pox and she should take her to the doctor.
Donna called an ambulance and Harley was taken to our small rural area hospital. About 45 minutes after Donna's initial call to me, she called again from the hospital. She was crying and said that something bad was wrong because they wouldn't let anyone in to see Harley.
I called my parents and told them what was happening and drove the 12 miles to the hospital. When I arrived all family members were being kept out of the emergency room by a uniformed deputy.
I finally caught one of the nurses attention through the door and she informed us that they felt what Harley had was contagious and she was being transferred to a larger hospital in downtown Houston. She also told us that everything that could be done was being done.
Once the ambulance from the larger hospital arrived, Harley was wheeled out, she looked terrible. This "rash" now covered almost her entire body with huge purple welps. She looked as if someone had beaten her severely. She was in a drug induced coma and had been intubated, ( a tube in her throat for breathing ).
We followed the ambulance to the hospital and letting my sister out first, parked and went inside to the PICU, (Pediatric Intensive Care Unit). When Donna came into the waiting room there, she was hysterical. She said that Harley was bleeding from every orifice and she thought she was actually dead.
We were placed in the "family room" where they usually break bad news to you. We remained in that room for 5 days. Harley continued to fight for her life.
We finally had to move into the open waiting area, so the room could be used for other parents. The doctor's still didn't give us a lot of hope for Harley, just kept saying the longer she made it, the better her chances.
Harley was now on a respirator, her kidneys had ceased functioning so she was receiving dialysis, her blood pressure was maintained with medication and she remained in a coma, hemorrhaging internally.
At one point the nurse did what they call a pupillary test. He had suctioned Harley's breathing tube and she didn't have any sort of gag reflex from it. She usually did. So he took a paper tissue and holding her eye open, he touched it to her pupil, no response.
Needless to say, as I watched him do this, I knew what he was looking for and when Harley had no response I just knew they were going to tell us she was brain dead.
They called for a brain scan and we prayed and prayed and prayed. The report came back, normal, except for the lesions covering her brain.
This disease causes the "rash" or lesions to form not only on the outside of the body, but also on the inside. All of her organs were covered with lesions. Because of the hemorrhaging which is part of the disease, blood clotting medications were also being administered to her.
The blood clotters are a double edged sword. They control the hemorrhaging, but they also cause blood clots to form which are then passed through the venous system, usually ending up lodged in the extremities.
Harley's left foot, left hand, part of her right foot and her left ear were very a deep shade of blackish purple from lack of oxygen. We finally asked the doctors how long they could remain that way and still be saved. We were told, "Consider what is now darkened....GONE!"
Harley would lose part of her limbs, but she was still alive, still with us, and she continued to fight. My sister and I stayed with her. Talking to her and rubbing her little forehead, because it was the only part of her body not covered in tubes and tape.
My sister, Donna, never left Harley's side. Harley remained in a coma for 2 months. At one point they took her off the ventilator, but had to put her back on it, she just wasn't strong enough to breathe on her own.
Just after the 2 months, Harley was awakened, ( her drugs were reduced), and removed from the ventilator. She had turned 3 years old while in a coma.
What a little fighter she was. She was now so weak she couldn't even sit up alone. She had been placed in diapers while in bed and since she had just finished potty training when she became ill, she was very upset at finding herself in a diaper.
Harley went through physical therapy daily to regain some of her strength. Her left foot, most of her left hand and part of her right foot remained dark, now turning black and becoming hard. She had what they call "dry" gangrene in these areas.
Harley remained in the hospital for another 2 months, then came home. She was still not able to walk so we placed her in a large wooden wagon, filled with plush pillows and her favorite stuffed animals. We pulled her around the house and took her outside for sunshine.
Harley improved rapidly. She weighed about 17 pounds at this time. She had to go back to the hospital to have her left foot, the first and second joints of her left hand and two toes of her right foot amputated.
They had initially told us to be careful with her as these limbs could "fall off" on their own. Her thumb did come off in my hand. Can you imagine seeing a child's finger in your hand? I hope you never have to experience that. The doctors told us that if they came off on their own, it would be easier on her than amputations. But they started to become infected so the amputations had to be done.
Today Harley still struggles with the ravages of this disease. She has deformities in her bones, just having the first of many surgeries on her right foot. We learned she is nearly deaf, due to the scar tissue from the lesions on her ear drums. She wears dual hearing aids. Of course she has a prosthetic foot on her left leg and has speech problems.
Harley was just starting to speak really well, coming out of "baby talking" when she became ill. With 4 months of hospital time it seemed like she "forgot" a lot of her speech. What was really wrong was the hearing problem. She couldn't hear us talking to her, so couldn't help herself "remember" speech. Her speech is improving with therapy and the hearing aids.
The doctors have told us that it is impossible for them to tell us what all to watch for with Harley, as not enough people have survived this disease for there to be a study of the long term effects.
Harley is now 5 years old. She only weighs around 27 pounds, so is still under weight, but she is a happy, outgoing little girl with a BIG smile.
We thank God every day that Harley survived. She lost a lot, but I know God has a special purpose in store for Harley.
If sharing her story helps just one person to vaccinate their child against this disease, then Harley's losses are worth it. No one should have to suffer as she has, nor should any parent or family member have to watch their child go through this.
May God bless and keep you all, as He has our Harley.
Harley's Great Aunt
Harley is having surgery on her legs this week because the growth plates are damaged.
You can send your prayers to her at Prayers for Harley
Prayers For Harley
My Dearest little Harley, I pray Angels will watch over you and God will make you strong and heal you completely very soon.... I send you many hugs and love, Frankie
you are in my prayers. Hang in there. Sherry
May your surgery go well this week. May this be the last one you
ever have and you live happy, healthy life. Don't lose your faith
Harley...remember our Heavenly Father never gives us anything we
can't handle. You are a true treasure in His eyes, NEVER forget that.
Praying with all my heart sweetie!
Faithful Daughter Lana
has a plan for us all and for you, Harley, he has an even bigger plan.
You have been chosen by him and that makes you very special. I will pray
for you and I know that you will continue to get stronger and healthier with