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Juleah's Stem Cell Transplant

$1,635 of $3,500 goal

Raised by 29 people in 13 months


For those who don't know already, I suffer from a very rare neuro-muscular disease called Stiff Person Syndrome that causes severe muscle spasms that can tear muscles and ligaments, break bones and just generally tear my body apart.
https://en.wikipedia.org/wiki/Stiff_person_syndrome

It has progressively gotten much worse over the past 6 months and has stolen my life away from me...UNTIL NOW. I have the chance to participate in a legitimate clinical study for a stem cell transplant, that has shown extremely positive results in Stiff Person Syndrome patients!


I am so excited for the opportunity, but the problem lies that the study is at Colorado Blood Cancer Institute at the Presbyterian/ST. Luke's Medical Center in Denver. While Medicare will pay for most of the medical procedures, they will not pay for transportation, lodging when I am not admitted to the hospital, food etc. Luckily the hospital has its own lodging called The Christopher Inn, which is SO much cheaper than any other hotel in the area ($65/night compared to $180+/night!)

This is where I desparetely need help: I have my initial evaluation on December18, and I need help with airline tickets (~$200), hotel cost (~$200), transportation to and from the airport (~$100), and food while I am there (~$100). This is extremely urgent, especially the funds to get me to the evaluation on Dec 18-20, so if you can help with funds or airline miles, it would be amazing! I really need everyone's help with this!

I will then have to return to Denver for my first round of chemotherapy so there will be similar costs for that,but I will have more information following my evaluation. 


Again, I am extremely excited of the possiblity of getting my life back, and with your help it is possible to do so!This study is already so much better than the initial Chicago study that I originally asked help for, that turned out to be very shady, and now that I have more information  regarding it, I am glad that I didn't qualify, because I may not be here anymore!

Again, I am not someone who would normally ask for help, but I am in a desperate situation, and my only other option is to keep going downhill with this disease, especially now that the current administration has made more cuts to my insurance and I have now lost my Medicaid, which adds additional costs of $1k-$2k+/month for co-pays and medicine. I am also on the brink of losing my immunoglobulin infusions because I cannot afford the co-pay of the medication (which is 20% of ~$8k/month plus the cost of supplies and my home health care that does my infusions), and to put it bluntly, without this my condition will go downhill fast and I will die. It's an incredibly frightening thought, and I am terrified.

Thank you all SO MUCH! I am so lucky to have such a wonderful group of friends and family that always have my back: here's to a healthy me!
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So. I got a call from the Chicago doctor today, I do not qualify for the clinical study. The GAD65 levels in my spinal fluid needed to be above 200, and mine were only in the 100s. So basically they wanted patients with higher numbers to fit their study to bump their study to get govt funding, and as sick as I am, I don't fit their criteria.

I am crushed, but I guess relieved at the same time, because the chance that the study would not give me better results and the chance of a longer lifespan were just not there.

So for now, I continue to fight for my life, but I stay here instead. I have stopped my Go Fund Me campaign, and am so thankful to those of you who donated and every penny got me to the evaluation in the first place. If you donated and would like to be reimbursed, I will do so. I also have every receipt to show that all funds raised went to this evaluation trip and I was not just a mooch trying to get money under false pretenses.

I am horribly embarrassed and heartbroken today, but I'm going to keep fighting for my life, and I can't thank you all enough for helping me in my fight.

XOXO,

Juleah
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My evaluation and first trip to Chicago is complete, but now is when it gets really real and gets scary for me.

I fly back to Chicago at the end of October to begin mobilization and chemotherapy.
Round trip airfare:
$250
Transportation to and from O'Hare:
$100
Initial 2 days at Worcester House:
$80/night= $160
Two days in hospital for initial chemo dose
5 days at Worcester House after initial chemo dose:
$80/night=$400
5-8 more night at Worcester House while taking chemo/mobilization meds:
$80/night=$400-$640
Groceries=$200

Mom's airfare to have medical power of attorney and help: $313.50
Transportation to and from airport:$100

I am terrified of the entire procedure, but this gives me a chance to live so much longer, and possibly be healed completely, and without this, gives me maybe 2-3 years.

Again, please share, donate if possible, but the more it's shared, the better chance I have. I will also be happy to share my paperwork and schedule if anyone wants to see exactly how the funds are needed/being used if there are any questions or concerns.

Thank you to all of you for helping me get this chance to regain my health again.

XOXOXO,
Juleah
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The evaluation is over and I'm heading home for now. I still have 4-6 weeks here once I come back and will still need all y'all's help!

Please continue to share my campaign anywhere and everywhere, donate if you can, and I'll gladly take all the emotional support!

Love you all!
XOXO,
Juleah
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Last day of evaluation here in Chicago: 6:30 am (4:30 my time, yikes!), then they take my blood and I get to sit down with the final doctor. Everything got really real, REALLY fast yesterday when they gave me the treatment schedule: I won't lie, it scared me a lot! I'm going to be very VERY sick and in hospital for 4-6 weeks and that's after 3 weeks of outpatient self-injections, labs, etc.

So I'm awake after maybe 2 hours of sleep and ready (NOT) for an EMG and to keep in keeping on.

I have to keep on telling myself that this is to get my health back, no matter how bad it gets in the mean time, it's worth it for the long run: to be healthy and to be around longer for my family and to have a REAL LIFE again!

So again, thank you all for getting me here. Please keep sharing my campaign, there's still a long way to go and it's going to be rough.

All of XOXOXOs,
Juleah
5:30 am Central, 3:30 AZ time: 2 hours of sleep
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$1,635 of $3,500 goal

Raised by 29 people in 13 months
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$20
Georgia Zatto
12 months ago
MC
$30
Michael Curtis
13 months ago
$20
Anonymous
13 months ago
$30
Heather Snitch
13 months ago
$15
Becky Lewton
13 months ago
$100
Anonymous
13 months ago
JC
$50
Jason Carney
13 months ago
LP
$10
Laura Perry
13 months ago
LW
$50
Leann Wright
13 months ago
RT
$25
Ron Thomey
13 months ago
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