January 26, 2013

Story of Josie

Today I'm taking my blog's attention away from Echo, Dakota and myself to put the spotlight on a fellow equestrian, Josie. Typing one handed while my right hand sits in a splint is a royal pain but I wanted to  share this sooner than later. Josie is a friend of mine that I met through out mutual love of the horse. Before I continue, I want to say Josie did not ask for myself or anyone to do this, I approached her for permission to share her story. Secondly some of you know this is out of character for me to share something like this. My Facebook, Twitter, etc is not flooded with 'shares' and 'likes' of a cat that needs to be adopted or a plea to get 1 million likes so X will happen. In fact, I'm guilty of deleting those post from my view so I do not repeatedly see them. Anyways...

Josie and her lovely horse Loki
Josie has Cystic Fibrosis. Despite being diagnosed at a young age, she has not let her disease slow her down. Josie started riding at the young age of 9 and got her first horse Honey when she was 11 from the Make-A-Wish Foundation. Josie enjoyed the joys of horse ownership with Honey, competing mostly in Hunters with her. Late 2009, Honey was stricken with the neurological disease, EPM. During treatment, she started riding a rescue horse her trainer had. After loosing Honey to a battle with EPM in 2010 she got Loki, the chestnut gelding rescue she had been working with through Honey's illness, from her trainer. After her initial battles with him in training (rearing, refusing to canter, etc.), a she has shown and competed with him in Jumpers and even has explored a little eventing. 

Loki seemed to be just what she needed through her battle of Cystic Fibrosis. She has convinced him that carrying her oxygen concentrater in a saddle bag as she rides is a good idea! We all know how an oxygen concentrater is a highly dangerous horse eating object, so this is quite the feat (I'm sure Dakota would be convinced of this at least). Her future plans with Loki also include training him to drive.

Josie also has a love for theater as it is the main focus of her studies at Northwestern University in Chicago. However, she was hospitalized in the fall, her lung function levels dropped to 20% and in December was placed on the list for a lung transplant.

Josie was just released from the hospital January 17th. Instead of going home to rest, she has returned to Northwestern University, where she studies theater, in hopes being able to successfully finish this semester. Obviously while she is on the transplant list and has such low lung function, this also leaves Josie out of the saddle. 

Josie's mother recently cleared some things up on the transplant cost:

This is Josie's mother Nicolle, writing (note there are other admins on this page). I am so touched at the kindness of strangers and the amount of support we are receiving for Josie. I do want clear something up. The bulk of Josie's $750,000 transplant IS covered by our insurance. We are left with a balance that will need to be paid. Josie WILL get her transplant as soon as lungs become available. They will not hold her transplant because we do not have our part. We will have to pay whatever we owe over time until it is paid off. There will also be costs incurred related to transplant, post transplant and for the rest of her life that the insurance will not cover. We have been battling with our current insurance company over medications she needs for years that they do not want to pay for and I am sure we will continue to do so. We are grateful for all your help and support and it will all be used for Josie's transplant and recovery but please DO NOT feel that Josie will not get her transplant because we are "uninsured". We do have insurance, but as most of you know insurance does not cover everything. Please also take the time to register to be an organ donor at Gift of Hope. There are thousands of people waiting for organs who will never get them because there are not enough donors.
Also according to her mother, the average wait time for a lung transplant is six months. Because Josie is unusually small, she will most likely need lungs from a child--meaning the wait time could be even longer. 
Josie's official UNOS notification
A few days ago Josie had to be readmitted to the hospital during a routine check up. The day before being readmitted she was bed ridden with pain. She still is in the hospital as of today (Jan 26) but since there is no new infection in her lungs, hopefully she can be released again very soon!

About Her Disease & Transplants

So to all of my fellow horse friends, blog readers, followers, etc... I'm asking for your help. I know everyone has someone in their life that needs help, so what I'm asking is you simply share Josie's story. Not everyone can afford to donate but everyone can afford a few minutes of their time to either 1) Share this on their blog 2) Like AND share Josie's Transplant Facebook page or 3) Tell people word of mouth. Now... for those that can donate... even $1-$5 can made a difference in her transplant cost. $5 would be equivalent to a meal during her hospital stay before and after her transplant. $1 could cover the cost of a needle syringe. Also if you don't feel comfortable sharing Josie's story, feel free to take a few minutes to learn more about Cystic Fibrosis.

Lets help get Josie back to the place she loves most!
Thank you for reading, donating or sharing Josie's story. 
-From Allison Dakota & Echo


  1. :( I defi know that waiting for a lung is a long and tortuous process, a couple years ago one of my dear barn friends was diagnosed with a rare disease that left her hospital bed ridden for a long time. I cried most nights hoping that she'd get her lung and live, she finally did, she's doing great now, always positive and still riding.

  2. What a touching tale, I hope Josie gets her lungs and can return to riding & caring for Loki who sounds like they have forged a wonderful bond together!
    Keeping everything crossed for them and wishing you continued speedy recovery with your wrist.


  3. What a beautiful post. I know Josie- have known her mother since we were in kindergarden. It touches all of us deeply that you took the time to share her story. I just wanted to say thank you.