Out in the World...

Wow, this update is LATE. Sorry folks, offline life got a bit.... busy the last few weeks. I spent a lot of ttha time trying desperately to find something that I organized and packed before I started my add meds which was a challenge. The good news is, it finally turned up (in defiance of all logic) and in the process I managed to reorganize and repack a LOT of things that I needed to reorganize and repack anyway.

Aside from that, I (SarahCate) tabled at a small health expo in a retirement community, sharing PrettySick supply offline for a day, and it went even better than expected. It went so well in fact, that my goal for the new year is to find more (and larger) health fairs that we can participate in. Even though it was outside our typical demographic, we had lots of traffic and were able to share the work we're doing here with people that likely wouldn't happen upon us on their own online. Add to that our plan to visit and network at the Abilities expo in Dallas in December, and we're getting pretty excited about the possibility of connecting even more folks in the community to the resources we have on the site.

Here I am, all set up and ready to show:

We have a few other things happening in the background that we hope to be able to share soon (seriously, some exciting stuff is headed our way :fingers crossed:), but for now this update is a short one, and we hope that your last few weeks has been less stressful than ours (but at least half as productive!).

Welcome to fall for those in the same hemisphere, amy the changing weather be kind to all of our creaking joints and spasming muscles.

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THIS MONTH'S FEATURED SHOPS

TurkeyTot Customs

Custom Tubie & G Pads, Line & Port Covers, | Ships Worldwide from US | $3+

KangaRootique

Pins, Patches, Stickers and Art | Ships Worldwide from US | $2+

MyDollarBank

Mobility Aid Pads, Covers & Bags, Bibs, Caps, CPAP Hose Covers & more | Ships Within US Only | $5+

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CAMPAIGN(S) OF THE MONTH:

Normally, each month, we feature 1-3 fundraising campaigns. We like to share these links so that visitors who have the means know where need may be and can help folks in our community who are trying to get access to care or equipment they otherwise can't afford. Because there are so many folks needing help right now, we're going to start sharing a few campaigns a month- in hopes that we can help spread the love as widely as possible. If you are able, please consider donating to one of these fundraising campaign to help those who need it.

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Medical Debt Relief for Chelsea

Starting in early 2018, I became unable to work as an Early Childhood Educator. Since then, my health has been a bit of a rollercoaster, including a diagnosis of Severe Adult Growth Hormone Deficiency and a Double Coronary Artery Bypass Graft open heart surgery. These are not the only ailments I am combating however; I also have: difficult to manage Type One Diabetes, Hypothyroidism, and Rheumatoid Arthritis, among other more minor problems.

All of this has been challenging, but with the support of my family and friends I have been able to cope emotionally. Finances are a bit of a mess, on the other hand. With $9000 of deductibles in 2 years, travel to get diagnosed, and basic living expenses, I have accumulated a large amount of debt. While I have housing and insurance thanks to my family's generosity, my credit card is close to maxed out at over $10,000.

I will be looking for part time work very soon, but will probably only make minimum wages as an entry level admin. With the amount of debt I have accrued, I am not sure I will ever be able to climb out of this hole alone. If you have means to help and feel compelled to do so, I would be eternally grateful. If you have limited resources and know of someone who needs it more, please give to them. Sharing is also very helpful.

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

*Please note, this link goes directly to the preferred paypal page to donate.*

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My World Turned Upside Down

I was diagnosed with hypermobile Ehlers danlos syndrome, dysautonomia, and general chronic pain. Lost my job, found out I need hearing aids, got a wheelchair of my own but no way to take it anywhere. Looking for work desperately but I don't have enough job background between mental and physical disabilities. Basically I'm out of a job and have been for months without luck. Hubby works his ass off and when he's not working he's doing postmates to help get everything he can, meaning barely any time with our kiddo. I need hearing aids and they average on the cheap end at $3,000 per ear, I need help getting an accessible vehicle so I can get to/from work with my wheelchair so I'm safe. I need help with getting something to track my heart rate 24/7.  Any little bit will be very appreciated. 

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

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Service Dog Fund

Hi! I’m Mae, I’m 22 years old, I’m a hairstylist, and I’m physically disabled. I’ve found an AMAZING opportunity to get a service dog prospect that I just can’t pass up. My intention has been to pay for my dog entirely by busting my ass and getting as many clients as possible into every day, but friends from out of town wanted a way to help, so I set this up.

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

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Need Help with Top Surgery

Im Andrew. I’m 33 years old and I’m transgender.

it took me 32 years to finally release those words from my mouth and make the reality of everything I’ve felt since I was a very young child. At the age of 4 I knew something was different about me. I honestly had thought that I was put into the wrong body. Which now I am able to understand as an adult. I can remember very specific times where I had wished that my body would change and I would be the boy I wanted to be and as I approached puberty I knew I hated everything about myself. I battled with suicidal thoughts for many years. Being bullied, not having many friends, being the girl that looked like a boy. So many things. I tried coming out when I was 25 once hormone replacement therapy first started to be introduced. I knew I wanted to do it but was beyond petrified of rejection not just from family but friends as well. So I decided not to say anything or do anything about it at that point.

I had tried to talk about it in relationships and was told I’d be left. I was convinced that I would just have to live my life in the internal misery I was in. It wasn’t until just over a year ago that I had someone by my side that saw me for who I truly was before I even let the words leave my mouth. Now she’s my wife. She supported me in getting health insurance, finding the drs I needed to get the ball rolling, finally letting myself be free. I was overwhelmed with support from friends and family. Now I’m over a year into my transition and anyone who knows me can say that this is the happiest and most comfortable I have ever been in my life.

The main battle I struggle with now is dysphoria mainly when it comes to my chest. Unfortunately health insurance doesn’t look at dysphoria and top surgery as a need but more as a want. I have to fight myself when I get into the shower. It’s mentally taxing and emotionally taxing. I have had a consult with a highly recommended surgeon but like I said my insurance doesn’t cover it because of the medical code that is used. Not having the surgery can lead to complications down the road as well. I feel horrible even asking for help but I’m running out of options. I plan I’m saving myself as well as this is just the cost of the surgery and not the time missed from work or hotel stay in south Florida for a week for a post op follow up. Thank you in advance to anyone who helps and it will change my life forever.

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

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If you can't contribute, please consider sharing any of our featured campaigns on your social media! Someone you know may be looking for a way to give back and could make a huge difference in someone's life! You can also look at previous blog entries to see if other featured campaigns are still in need of help!

Attention, Please!

In the course of starting and maintaining this website, I've read and researched a lot. And one of the things that I kept seeing over and over again were posts on social media about what it's like to actually live with ADD/ADHD. What it was like to grow up having it, diagnosed or not. What it's like having it as an adult. The ways in which it affects someone's day-to-day life, work, relationships.

And I found myself more and more, seeing myself in those posts. I saw my childhood and education in them, my teen years, my jobs and relationships, my day-to-day life now.

I've spent the last 7 years pinning all of my brain troubles onto post-chemo issues. My terrible memory, my inability to focus, my issues keeping track of the day, the date, the time. But reading about the lives of people with ADD, I realized that my issues go back before I had chemo, before I had cancer. My brain has always been unreliable. My memory has always been a challenge, and my head has always felt too full, too busy, too crowded. Chemo just made all of that... worse.

When we first started PSS, it was... easy. Building this site became my hyperfocus, my special interest. I would spend 8-12 hours at a time at my computer, creating, building, designing, researching. But the longer we're here, the harder it's gotten for me to keep going. Not for lack of desire, because I LOVE this site and I LOVE what we're doing and it's crucial. No the problem comes each month when I sit down to do this homepage- and you've all seen it. Late releases, fewer and fewer new shops added at a time, even june, without a new homepage at all (though to be fair, part of that was a weather/power issue). But in the last few weeks especially I realized that it's not JUST that my brain is struggling, but that the struggle is causing me more and more actual distress.

And since there is no way I'm going to stop this project, my only other alternative was to seek some help with my broken brain. i made notes, texted them to myself and went to see my doctor. A conversation, a checklist, and about 20 minutes later- that's how I got my ADD diagnosis- and a plan to help me make my broken brain work better.

It's been about 2 weeks now, and I'm learning my way through my adderall. But the short story is- when my meds are active in my system- my brain is SO QUIET. Instead of a constant backdrop of to-do-lists and frustrations, and distractions, and worries, I can pick a task and actually sit down to accomplish it. If I take my doses as prescribed (1 in the am, and 1 at noon) I am guaranteed basically 3 or 4 hours of really good, focused, FUNCTIONAL brain time. I've done more in the last 2 weeks in small 4 hour chunks than I've accomplished in the last 5 months put together. And I do not miss the distress of knowing what needs to be done but not being able to DO it.

And I recognize that my process for getting diagnosed and helped is NOT the norm, especially for adults. I'm blessed with an absolutely incredible Primary Care Physician, and decent medicare advantage plan, and said doctor really understands how to work that plan to give me the best care at prices I can manage. But even with that privilege, I suppose I'm sharing all of this in the hope that I can reach even one other adult out there, who is ripping out their hair in frustration, who is distressed sitting at a desk 8 hours a day without actually accomplishing what they NEED to do, who forgets every loved ones birthday because ... what are calendars?? Who can't find an important document because they can NEVER find anything, who is chronically late to everything because time is too weird to keep track of... and convince you that it is worth the fight to seek out a diagnosis.

You are not too old. You are not beyond help. You deserve to have a brain that is, even for just a few hours a day- not loud and cluttered and broken. You deserve to have the kind of peace of mind that comes from functionally managed ADD. Don't lose hope. You are worth it.

In related news, (thanks to adderall) there are 3 NEW DESIGNS up in our own shop this week! And, since we have a major web hosting bill due on September 9th, now is a GREAT time to buy some snarky merch from us at the PrettySick Supply Shop

We've got a new set of designs in our "STILL" series, and brand new designs- all specifically for our invisibly disabled/invisible ill folks. (Another version of the When I Look it design is coming that will read STILL SICK instead of still disabled)

So please check out our shop and get yourself or someone you know something snarky and fun, or you can donate directly to help us with hosting fees etc. by donating to our paypal by clicking HERE

We need $204 by September 9th in order to keep this website up and running and free to our community. Right now we're at $30 and we'll update throughout the next few weeks as totals change.

UPDATE: Thanks to one large donation overnight, we are now fully funded for our webhosting for the next year! Thank you so much to everyone who shared and donated! We can't wait to keep maintaining and expanding this resource for another year!

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THIS MONTH'S FEATURED SHOPS

Model Deviance Designs

Designs for Defiant Deviants | Ships Worldwide from US | $10+

StayWeird Be Kind

Pins, Patches, Stickers and Art | Ships Worldwide from US | $2+

Tap2Tag

Chipped Medical Wristbands, Cards & Key Fobs | Ships Worldwide from UK | £6+

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CAMPAIGN(S) OF THE MONTH:

Normally, each month, we feature 1-3 fundraising campaigns. We like to share these links so that visitors who have the means know where need may be and can help folks in our community who are trying to get access to care or equipment they otherwise can't afford. Because there are so many folks needing help right now, we're going to start sharing a few campaigns a month- in hopes that we can help spread the love as widely as possible. If you are able, please consider donating to one of these fundraising campaign to help those who need it.

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I'm Sick, I'm scared, and I Need help

I need serious help. My last attempt at a donation post didn’t go great, but I’m praying this one will do a little better.

I’m Donovan, I’m a 23 year old closeted trans-guy, and I have been thrown around the medical system for the last year with no answers and a lot of bills.

Starting last summer, I started throwing up. A lot. I lost almost 200 pounds in less than a year. It put me in the hospital 8 times. Three times in Dallas, Texas, and five times in various hospitals throughout Utah after having to move back in with my parents because I couldn’t take care of myself anymore. I don’t even know how many times I visited Emergency Rooms.

And after all of this, I have no diagnosis. No doctor knows what is going on. They would stabilize me and send me home. And I’d be back a month later. It took me realizing that every time I was in the hospital I was on my period to sort of start heading in the right direction. I went to an OBGYN and got on the Depo-shot to stop my menstrual cycle. And that actually stopped the vomiting.

For like, 5 months. And right when I started trying to move back into working full time, trying to get back on my feet, I started vomiting again at the end of July. More doctor visits. More bills. No answers. Period comes, goes, the nausea goes as well. I try to go back to work, and it happened AGAIN last week. Sending me to the Emergency Room with severe abdominal pain from the sheer violence of my vomiting. I ripped up the blood vessels in my intestines.

All of this chronic cyclic vomiting has destroyed my tonsils, and caused them to be chronically infected. So I need surgery on the 10th of September. And so, the wonderful full time job I worked so hard for is gone. I have no source of income. My Fiance and my best friend are left with all the bills. And after rent, we wont even have enough for groceries tomorrow.

My roommate @digitalplxguefox​ has a paypal set up for donations and also takes artwork Commissions. They’re willing to do some to help me. Please help me. I don’t know what to do anymore. Please. Even just 20 bucks so I can be able to buy Popsicle after my surgery on Tuesday would help.

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

*Please note, this link goes directly to the preferred paypal page to donate.*

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Help Chris Fight Inoperable Brain Cyst

Originally this post was for funding top surgery, but now I’m more focused on funding the treatment for the 1.4cm pineal mass they found in my brain in early June.

I have seen a neurologist and a neurosurgeon, both who agree the cyst doesn’t seem to be causing my symptoms- but it absolutely is. Unfortunately with this type of cyst, doctors saying this is incredibly common.

There are only two doctors in the US that routinely remove pineal cysts- one in South Carolina, and one in Houston Texas. I don’t even want to consider brain surgery this soon, so we are exploring other explanations and solutions for my pain.

This cyst in my brain is causing nausea, vomiting, sleep disturbances, numbness and twitching on the right side of my body, short term memory issues, black spots in my vision, and flashes of light in my vision as well. The most concerning and painful symptom is the 6/10-8/10 pain headache that I have had for three months straight now.

I started having trouble sleeping over a year ago, and it is good that I have a reason why, but it is very scary to know that it might grow bigger or become/be cancerous

My Insurance covers most of my medical bills from the hospital, but there are many costs associated with my condition (prescription copays, OTC meds, assistive devices, braces for my legs, pain creams, etc) and since I can no longer work full time, to be able to go back to school in the fall like I want to to finish my degree (even if it’s just online classes at first) I just can’t afford to do that. I also probably can’t afford the Nerve Blocks that they suggested I get on my latest appt 8/2, which might not be covered under my insurance. They could be the solution to my daily headaches.

If these injections (directly into my occipital nerve) work, I would have to get them every 3 months. I’m not sure if that’s a forever thing. Apparently it’s something called occipital neuralgia.

They put me on steroids, they didn’t really explain why but they said I absolutely have to stop to aspirin. Apparently I had to take the steroids to come off the aspirin.

We are stuck in this weird grey area of having our basic needs covered, but with me not working full time anymore it’s harder to stretch funds to afford what some people would consider “luxuries”, (and what were cut from my budget as such) but are now having to be added back in as disability accommodations.

This is all very overwhelming, and while money does not buy happiness, it can buy things like:

- a meal ordered in so we don’t have to cook when I feel sick

-an Uber to a medical appointment so I can take a car instead of the train if the noise is too much

-a grocery delivery if I’m having extra trouble that week with fluorescent lights and can’t go to the store myself

-supplies for my baking website so I can grow my business

Thank you all so much!

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

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Jillian's Living Will

Jillian recently found out the unthinkable - not only does she have cancer again, 2 years after she was declared cancer free- but it’s terminal. Jillian has gone through 6 months of chemo, a double mastectomy with major painful complications, and radiation that left her with horrible burns- just to end up with cancer again, and realize that she will likely succumb to cancer. 

The bone and CT scans show cancer has infested her lungs, ribs, spine, chest, etc. Luckily one of the only unaffected places is Jillian's brain, allowing her to continue to share her wicked sense of humor and make decisions for her own treatment.  Jillian already had to get a thoracentesis, where they insert a huge needle into area just below her lungs, that is not supposed to have any fluid, and pulled out 600ml of fluid with blood in it, bc it was affecting Jillian's breathing. Jillian is facing day to day challenges and can tell that her health is declining rapidly. 

The doctor's haven’t given Jillian an exact time estimate but it’s so bad that they immediately referred Jillian to palliative care and mentioned hospice. Jillian does not have any financial support from her family and is needing to seek help from her close friends and the community to be able to cover her living expenses and medical bills. 

Jillian would like to be able to cover the cost of any medical treatment to keep her comfortable and to be able to get back to San Diego where her best friend and biggest support system is while going through these final stages of her life. Some of the expenses Jillian has includes, co-payments, pain management, moving expenses, rent, and all cremation and or burial services. Jillian does not want to leave her twin sister or best friend with any expenses and hopes that she can take care of her needs with the support of this gofundme account.  

Jillian was hopeful that she may be able to go on a Bucket List trip, however she feels her health is declining quickly and would really like to make her priority getting back to San Diego and being surrounded by her largest support system.  

It is unfathomable the amount of pain and suffering that one person can take. I hope that we can come together as a community and provide Jillian with the support she needs. Jillian has had 34 years on this earth and I pray that her final months will be filled with peace, love and kindness.

In Jillian's own words "Thank you and blessings to everyone who had been kind to me in my life."

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

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K'Xyas Medical Needs

Hi everyone! I was recently diagnosed with Hypermobile Ehlers-Danlos Syndrome. I also have some mental health diagnoses. Like everything else in life, some days are better than others. My doctors and therapist agree an emotional support dog would assist me greatly.

My goal with this campaign is to rescue a sweet pup to be my ESA and then work with a trainer to get my pup to pass the service dog certification. Please consider helping me reach a better life state for me and a sweet pup.

We found the perfect pup! Chloe, a 2 year old lab mix with huge ears and shorter legs. She is calm, sweet and adjusting great! Our next step is training! Please consider donating to help us get to service dog status!

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

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If you can't contribute, please consider sharing any of our featured campaigns on your social media! Someone you know may be looking for a way to give back and could make a huge difference in someone's life! You can also look at previous blog entries to see if other featured campaigns are still in need of help!

Summer Blues

I'm not going to lie, July was rough for me. The weather was actually better- steady at least, not as rainy, not as dramatic as June's nonsense.

But for some reason, July just deflated me. I'm so tired, and feeling frustrated and while I know these moments will pass (they always do eventually), I think it's important that, as chronically ill folks, as disabled folks, as pained folks- we reserve the right to say, "this sucks."

So, July sucked. It had it's good moments: a big bill got paid for me, we were able to order a sturdy vinyl banner for a health expo we'll be tabling at in September, a patron of PSS paid for us to do an order of 500 rack cards (woot woot), for the same event, and we've had 2 different folks who work in psych offices request a batch to put out in their lobbies (full disclosure, one of them is my sister, but still!)

But the truth is, overall, my day to day has been a struggle. I'm managing- feeding the animals, scooping litter boxes, bare minimum cleaning to keep the house up. But I had plans for July too. I wanted to do a lot of deeper cleaning. I wanted to scrub my stovetop, and vacuum. I wanted to cook more, maybe bake something. Instead, there was a lot of ramen and mac n cheese.

Sometimes though, the only thing you can do is accept that you can't do everything- or even most of the things- that you want or plan to do. So, July was a bit of a write off for me. So far this month though, I've updated this page, added 3 new shops, made a list of new things to search, removed a dead link, celebrated my birthday with 2 different sets of folks, and even baked myself some cookies. I'm going to pay for all of that tomorrow, but for today- I'm feeding off of a short spree of energy and accomplishing as much as I can.

And, as summer begins to close, we here at PSS wish all of our student spoonies the best of luck, and all the spoons you need as you head back to classes. Remember to take things one class at a time and that it's ok- if all you could do for the day- is exist. Sometimes, existing is the hardest thing of all.

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AUGUST'S FEATURED SHOPS

Just 4 U Dolls

Customisable dolls and accessories, including dolls with medical devices | Ships Worldwide from US | $15+

Comrad Socks

Premium & Stylish Compression Socks | Ships Within US Only | $21+ *Wide Calf Options Available*

FFORA

Manual Wheelchair Accessories Combining Form and Fashion | Ships Within US Only | $25+

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CAMPAIGN(S) OF THE MONTH:

Normally, each month, we feature 1-3 fundraising campaigns. We like to share these links so that visitors who have the means know where need may be and can help folks in our community who are trying to get access to care or equipment they otherwise can't afford. Because there are so many folks needing help right now, we're going to start sharing a few campaigns a month- in hopes that we can help spread the love as widely as possible. If you are able, please consider donating to one of these fundraising campaign to help those who need it.

=========================

Service Dog for Jayden

Jayden is a 10 year old boy in Catawba County, NC who has severe, nonverbal autism and intractable epilepsy. 

Jayden began having grand mal/tonic clonic seizures in February of 2018. We are working with Highland Canine out of Harmony, NC to train a service dog for Jayden. The service dog would be trained to assist Jayden during autism related meltdowns, to assist in tracking Jayden if he were to ever elope, and will also be trained as a seizure alert dog. Many of Jayden’s seizures occur during the night time and it is vital that we are alerted to the seizure in order to give any necessary rescue medications. 

This process requires a $2500 deposit before they even begin looking for a dog. To train a dog to assist people with autism, the fee is nearly $16,000. The additional seizure alert training would bring us to nearly $18000 (not including the initial deposit). 

If you are able, we would greatly appreciate a donation. We would also be so appreciative if everyone shares this. If you have any other suggestions for fundraising this cause, we are willing to do whatever it takes to raise this money for our boy!

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

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Operation Honey Fund

My name is Audrey, affectionately known as Honey , and I have Breast Cancer. 

On July 3rd 2019 I was diagnosed with Stage 1 Invasive Ductal Carcinoma. Of course it was hard news to process, as a woman it's the last thing you want to hear - and as a dancer and model, it's absolutely terrifying. I support myself 100%, so the reality of losing income and freedom of movement, even for a short while is not just financially crippling, but emotionally devastating.

It's been a very challenging diagnosis to accept and navigate, a lot of decisions had to be made very quickly, but thankfully I caught it very early and I have a very good prognosis.

So what's the plan?

- A final MRI is scheduled on July 24th to make sure there aren't any more tumors hiding around.

- Then I am scheduled to have a Lumpectomy on August 13th at Parkland Hospital - for which I need a $4,000 down payment to go toward my surgery which is estimated at about $74,000

- After recovering from surgery, I'll need 4 weeks of radiation, 5 days a week - which has still not been priced, due to the fact that Parkland Hospital does not have a Radiation department (I'll post updates on that as they come in )

Unfortunately, it's all very expensive to treat, and thanks to the comedy of errors that is my life, I'm uninsured.

That's where you come in with Operation Honey Fund!

I have some financial assistance through Parkland Hospital, but not all services can be covered, so I'll need help covering the cost of surgery, radiation treatments, medication, follow up appointments, lost income, etc. 

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

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K'Xyas Medical Needs

K'Xyas is a 2 year old medically complex child. He is a former 33 weeker who battles with gastroparesis, Chronic lung disease, FPIES, dysphagia and both central and obstructive sleep apnea. K'Xyas takes 13 different medicines 3 times a day to maintain a normal life. K'Xyas is also CPAP dependent.

K'Xyas' CPAP keeps growing mold despite multiple cleanings a day and having my apartment checked for mold. The CPAP has been replaced twice and now Medicaid is giving us a hard time about replacing it saying that they cannot replace it anymore. I am trying to raise money to replace it because without it he has issues keep his stats up and gasping for air in his sleep. Your contribution is greatly appreciated.

CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE

=========================

If you can't contribute, please consider sharing any of our featured campaigns on your social media! Someone you know may be looking for a way to give back and could make a huge difference in someone's life! You can also look at previous blog entries to see if other featured campaigns are still in need of help!