Jabyn Livingston's journey to healing!

For: Brad, Ashley, & Jabyn Livingston
Pensacola, FL
Organizer: Cindy Tregoning
Jabyn Livingston's journey to healing!  (Brad, Ashley, & Jabyn Livingston)
$18,515
of $20,000 goal.
Raised by 97 donors
92% Complete

The Story

This is Jabyn with his parents Brad and Ashley Livingston. He was born on January 24, 2013. On July 7, 2015, Jabyn was diagnosed with Batten Disease.

Birth - 1 Year Old
For the first year, Jabyn was a thriving little boy. He was developing as a typical child would. He would play with toys, laugh, run around, he loved to be tickled and play with cabinets and doors. He loved anything Cars and Lightning McQueen. He could watch the Disney movie Cars over and over.

1 Year old - 2 Years Old
But shortly after his first birthday, Jabyn's development began to stop. He was not talking or using most of the major motor skills. He would fall and stumble a lot. He wasn't waving or clapping and these signs led us to start asking questions to his doctor. An MRI was done in October of 2014, which showed that (at that time we thought) Jabyn had suffered a serious injury to the brain at birth and was diagnosed with Encephalopathy. Seizures and other complications started to present over the next several months. Jabyn's daily experiences are days of aggression, frustration, constant crying, tremors, still no ability to talk, or use motor skills including the ability to walk without falling on a regular basis. This has also made it very hard for Jabyn to fully participate in any type of therapy. He has great therapist who are wonderful and are patient with him during his sessions, when he is having his bad days.

2 Years Old - Present
In February 2015, Jabyn completely lost his abilities to walk. What started out as him falling down and having trouble getting back up, quickly turned into him not being able to get up at all.

On July 7, 2015, we got the horrible news that Jabyn was diagnosed with Batten Disease. This is a very rare and sadly, fatal disease. Our world was shattered and broken when we found out the news. Our once thriving baby boy, was now being told that he would soon go completely blind, lose ability to eat and drink on his own and would become bedridden within just a couple of years. How do you process that? How does a mother and father handle news like that? Luckily we have had so much support and prayers come in from friends and family all over the world. We are not giving up on our son. Though the doctors say the worst will happen, we are believing for a healing miracle in Jabyn.


From our family and friends:
This has obviously created a huge financial hardship on the Livingston family. They have insurance but every visit (which are several per week) comes with a $40 co-pay for all doctor and therapy visits as well as expenses for gas, food, hotels, and loss of pay during the trips and days off that is required to get Jabyn to many of his appointments both in Pensacola and Gainesville.

We as family and friends have set up this account to let you know of the situation and to give you the opportunity to support Ashley, Brad & Jabyn financially during this most trying time. We are expecting good reports for Jabyn in the future but understand that Brad and Ashley have a trying emotional and financial road ahead of them. Anything you can give will be a huge blessing to them and their family at this time.

Fundraiser Updates

Posted on October 26, 2015

Posted on October 26, 2015

Update on Jabyn going to Miami Children's Hospital (was previously Boston... And then Duke.. ??)

I finally received the call I have been waiting on for months! We will be traveling down and admitting Jabyn to the Miami Children's Hospital December 7th-11th!

He will have another MRI done, a 72 hour EEG (where he has to be hooked up to that crazy machine that he did back in February) and we will also be talking to the doctors who specialize in Battens Disease on all the medicine and trials that are out there that we can try.

We are asking for your prayers during this time! Please pray we receive the right doctors and for wisdom on our part to decide the right course of treatment for Jabyn.

Thank you to everyone who has donated and given to Jabyn's fundraiser! We can't thank you enough! If you'd like to help us get down to Miami (we will probably be buying airline tickets) or else it will be about a 14 hour car ride with a baby ?? here is Jabyn's fundraiser link. Your Prayers are appreciated most though! ????

https://www.youcaring.com/medical-fundraiser/jabyn-livingston-s-journey-to-healing-/302462

Posted on July 8, 2015

Posted on July 8, 2015

Update on Jabyn:
I debated on whether or not I wanted to post this. If I was ready. If I wanted everyone to know. But then I thought about all the friends and family we have praying for us and I want you to know what is going on so you know how to pray specifically.

This is hard. Really hard. My heart is broken as I write this and I don't know that it will ever be healed. We received the test results last night on Jabyn's labwork.

It kills my heart to say that Jabyn has been diagnosed with Batten Disease. It is a VERY rare neuro degenerative disease that starts around 2 years old in a child. Outside of a miracle from God, there is no cure for Battens. It is a fatal disease.
I am praying for Jabyn to be that one that is the miracle child for Battens. I have to. My mind won't let me think of what could happen in the next couple of years.

My emotions are on another level. I don't know why this is happening or what to do. If you know me, then you know I don't like to talk about what I'm feeling or talk about the situation, especially if someone asks me, "How are you holding up?"
Our family asks that you please keep Jabyn in your prayers.
The next year of our lives will be a different journey than any of us have ever been on and immensely hard on all of us and Jabyn.

Brad and I have had a ministry trip to New York planned for a few months and the results from this just happened to fall 2 days before we leave. I've gone back and forth on whether I should go, but all of my family and doctors have told me to go and clear my head and get away for a minute to just think about what to do next. We will be leave on Friday so we ask for your prayers for a safe plane trip and for me to be able to use this time to receive prayer and advice from so many of our church family in New York.

Please be mindful of the hard time we are going though if you call and we don't answer the first time or answer texts right away. We have already been sent so many encouraging and loving messages and I know once this is out, that there will be more. And we appreciate it so much. We can't thank you enough for your support and love.

Our next steps:
We will be traveling to Boston in the next couple of weeks to Mass General Hospital. Unfortunately, I don't know how long we will be there. This is going to require a great deal of money and time off work. If you would like to help or support us in any way for this journey, you can make donations at Jabyn's Fundraiser site.

Thank you all for your prayers, love and understanding. This is the hardest thing I've ever had to go through. And I thought losing my mom would be the worst. But when I'm told, my son has a fatal disease, it tore me apart and I don't know if I'll come out the same person. Please bare with me.
We love you all,
Xoxo
Ashley

If you would like to donate, you can at the link below.

http://www.youcaring.com/medical-fundraiser/jabyn-livingston-s-journey-to-healing-/302462

Posted on June 22, 2015

Posted on June 22, 2015

Update on Jabyn's blood work test:

The blood that they took 2 weeks ago was ruined in transit. It ended up getting too hot and the proteins in the blood were destroyed. The vile was supposed to be near an ice pack, so how that got missed, I have no idea! So the last 2 weeks of emotions, stress and uneasiness have been for something that wasn't even happening. We are getting Jabyn's blood drawn again today and it will be sent out first thing. I'm not wanting to post what we are testing for right now because it's just too hard to talk about, please understand, but please continue to pray for a negative reading on it.

Also, we just found out that July will be a hectic month for us.
If the results come back negative, we will either be going down to Shands again or to Duke University for 1-2 weeks for more testing. If the results come back positive, we will be going to Boston for about 2 weeks. ?? We had a week planned in New York for a ministry trip, so that may or may not happen now also.

To add on top of all that, my car is basically falling apart underneath me. I have to get a new one this week. So you can see how this is a very stressful time! ??

If you would like to donate to Jabyn's fundraiser, the link is below. Every penny goes to his medical bills, traveling for our upcoming trips, therapy and helping to provide a safe vehicle for him to travel in. None of it will ever go to "play money", so please know that it is being used for what Jabyn needs. ??

Thank you all for your continued support and prayers. We will update you again in about 2 weeks when the results finally come in.

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