Joeli's Voice!

This is Joeli. Today would have been her ninth birthday. One of the hardest realities is she is not here in the physical sense that her Mama can’t wrap her in her arms. But because of her loss, because of her voice that her mama continues to speak. She is still here. That Joeli’s voice is SO loud now by everybody else speaking. That the heavens can hear it! I wish everyone could know the strength and pain of her Mama telling her story. I honestly pray and am making it a demand of myself that one day soon people do hear her mama telling the story!

July 31. Joeli's Mama Brittany responded to a post in a Neutropenia support group for Moms. I was posting how we were struggling with Ady's diagnosis. Right away she offered her number! She said she new she could help! She gave me her number and told me to call her the next morning. So I did. Little did I know that conversation. That one phone call would change our life. The way I look at my babies. The way I hear and trust what is done medically with Adisyn. A friendship.

My heart broke. I heard the thing that is my worst night mare. As her reality.

Joeli was 3 years old. She had cyclic neutropenia. She was diagnosed when she was two months old. Her Doctor’s decided to deal with her being sick as it happened and see how she did. Her Mama has it as well and had been approaching her own Cyclic Neutropenia the same. When Joeli turned 3 Brittany wanted to have her 6 week cycle documented, to get her baby started on Neupogen. (G-CSF) which is an administrator of white blood cells growth factor. She would call to get results. But they'd make it hard for her to get results. They blew her off.

It broke my heart and instantly by the beginning of her story. I felt a connection that is indescribable. I new why she had told me she wanted to talk to me.

She called for results. No one called back. She begged for her baby to be put on Neupogen. She was starting school and Brittany was scared for her. He told her Joeli just wasn't sick enough. "With that, what could I do? I went back home." Two days later... Joeli got sick. She got a fever. They brought her into the ER where her CBC discovered NO neutrophils and a positive rapid strep test. However she had no signs of a sore throat. NOTHING. So The ER Dr. called the hematologist Dr. on call who blew it off on the infection causing the low ANC. They gave her a shot and a prescription oral antibiotics. She said "They sent us home." Joeli threw up right after her first dose of antibiotics. Brittany called her pediatrician who said she’d be fine. To just make sure she got plenty of fluids. But on Tuesday Brittany took her back to the Pediatrician because things were getting worse. She said “they didn’t do anything. No CBC nothing and I had been up for two days with her which is why I didn't think about asking for a repeat CBC.” She said that night Joeli felt so sick she couldn’t even walk to the bathroom. She carried her back and forth. AGAIN, Brittany called the Dr. who told her to stop the antibiotics. Again; Wednesday things got worse. She called AGAIN!!! With another response of “if she is drinking she will be just fine.” But Thursday came around and things got even worse. Brittany cried as she told me. “I took her pulse it was 200. I was up all night with her. I just new something was really wrong” Her Doctors office told her to meet them there when they opened. So she went. But when she got there she was told the Dr. was running late. She ran Joeli to the ER.
Again she started crying and I did too. She said “I new something was seriously wrong. They made us wait when we got there.” Joeli arrested and they could not get her back. She had pseudomonas aeruginosa. It ran then her lungs and heart. A week later Brittany called to cancel her follow up with the hematologist. She said when she called she asked if Joeli was sick enough. If she was sick enough now that she was gone.

She then described to me the heart ache of going back to a home full of reminders of her precious baby. Sappy cups. Dollies. A house missing her Joeli. How her arms continue to ache to hold her baby. She told me how she HATED that it had to be her Joeli. But that she wanted to make sure that it wasn’t my Adisyn. That she wanted to help me make sure that didn’t happen to us. I was speechless. This lady I didn’t know at all. Pouring her heart to me in hopes to help save my baby? Why? She didn’t owe us anything. She was so many prayers being answered all at once.

I don’t think there is any way I can give back to Brittany was she’s given to me. What her Joeli has provided for my girl. Because in the end it’s Joeli’s life that is helping to save my Ady. It’s her picture that fuels me in every Doctor appointment.


I am holding our friendship close to my heart. What Brittany has given me is something I don’t think any one else could have. What she continues to give me when I need a boost. The words my heart needs to hear. That we can fight this. We WILL get treatment and a plan for Ady J. SO. WE will! Believe me my voice has gotten much louder! AND… Yours can too. Will you help me raise Joeli’s voice?

Neutropenia is a very rare blood disorder that effects your bodies Neutrophils. (The cells responsible for fighting infections.) Many people have ever heard of it. Sadly many Doctors don’t even understand it. We NEED to raise awareness. What happened to Joeli didn’t have to. People NEED to understand! You are your child’s voice! Can Y’all do me a favor? Lets help lift up Joeli’s voice!! My heart is that her voice isn’t silenced. BUT that it’s LOUD! That her life. That her story can touch your life in some way! What ever that may mean to you. Again/// You are your Childs voice.

Happy Birthday to the girl who is helping to save my baby. Joeli Mothershead! You will for ever be in my heart.

JESS