Miracle for Meg

$26,315 of $100,000 goal

Raised by 391 people in 9 months
Created November 16, 2018
Fundraising Team

 !!Please check our UPDATES (the tab right of 'Story') for important information!!
Follow along on her journey:
Meghan's Photography Work
 Meghan's Personal Instagram 

Our sweet friend Meghan is in immediate need of surgeries and medical treatment in order to aid multiple complications arising from a degenerative disorder called Ehlers-Danlos Syndrome (known as EDS.) 

Though we are providing her with care and support, cooking meals for her, carrying her up and down stairs, laughing and crying with her, her condition has gotten to a point where we are unable to give her the serious medical care she requires.

Though we would not shy away from the challenge if we knew how! That is the contagious spirit we've absorbed from our friendships with Meghan.

You see, Meghan has an oversized heart (figuratively; the best kind!) and we know that she will not let her condition put limitations on the opportunities in her life. But she needs our help. Aside from her physical condition, pain has touched many areas of her life, and although it is not our place to share those things publicly, we can tell you that she is grateful for her life and uses that pain to learn about herself and help others.

Somehow, she is beaming with innocence and courage.

With your kindness, we are raising money for upcoming costs related to complicated, major surgeries, that will change her life. Just like she has changed ours. We'll give you more details below.

This is Meghan's story:

A few months ago Meghan was bounding in the waves along the coast (floating helps relieve weight from her muscles and bones,) taking her Australian dogs on a roadtrip in the North Carolina hills and creating beautiful photographs as a professional photographer. Now, she struggles to walk to the bathroom. Sometimes she will even get down and crawl on the floor. As her friends, it is heartbreaking to watch what seems like never-ending waves of taking over her life.

So, What's The Deal?

Without going into too much detail, Meghan is suffering from a diverse array of chronic pain and degenerative symptoms due to Ehlers-Danlos Syndrome. EDS is a disorder that causes hypermobility in joints and affects the connective-tissue in those that have it. Connective-tissue is the skin that wraps around our organs, muscles, nerves, veins and so on. Recently, connective-tissue was classified as an organ, which gives us so much hope for the future of EDS research and quality of life for those with EDS (hang in there guys.)

Due to EDS, Meghan's joints bend in ways that ours do not, and it can be very dangerous. Large, dark bruises appear on her body overnight. We're pretty sure she's not a street fighter!

Among the many symptoms that come with EDS, she experiences constant pain from the moment of waking up, all the way until the end of the night. Sometimes the days don't end for Meghan, and she cannot fall asleep for multiple days because of excruciating pain. But, what kind of pain?

EDS is her overall condition, but it is common to have a bundle of disorders with EDS.

Meghan also has Tethered-Cord (TC) which is when the spinal cord fails to detach from the bone structure of the spine. This likely happened in the womb, and causes many mobility issues and nerve issues, such as complete numbness in the legs (Meghan often can't feel her legs even when walking or driving,) intense and uncontrollable muscle spasms that happen at any moment and a variety of shooting pains throughout the nerves in her lower body. Just to name a few.

There is also not much dura around her brain, which is basically jelly that cushions the brain against vibrations. Most people don't have to worry about it, but when driving Meghan we try to take side roads that have the least amount of potholes and cracks, because her brain jams into her spine on a slight bump and causes immobilizing pain. Just imagine your brain in a vice.

Then there is the craniocervical instability. It means the vertebrae in her neck that support her head are highly unstable, and they actually pinch her brain stem. She cannot turn her head much at all, and she especially cannot tilt her head back like when you want to feel the rain on your face, or look at the clouds.

And also POTS. Postural orthostatic tachycardia syndrome if you want the full name. In simple terms, it is a syndrome which interferes with the rate of bloodflow as well as the heart rate. Sounds pretty straight forward, but it causes Meghan's body to have difficulty regulating her temperature, feeling extreme heat and cold in a place that is room temperature. It also causes gastrointestinal complications, foggy brain, fatigue, anxiety, headaches and migraines, intense chest pain and insomnia, to name a few.

Her body is attacking itself in what seems like an endless cycle of pain. It is fighting itself and shutting down.

Here's What's Next

Meghan has been pushed off of her health insurance and is not eligible for disability.

Currently, her family and friends are providing basic care and needs around the clock, but she urgently needs surgery. Like, yesterday.

Earlier this week (mid-December) her primary EDS specialist in Baltimore, Dr. Clair Francomano, decided that the most important need for Meghan is to undergo a surgery for Tethered-Cord and detach her spinal cord from her spine. This surgery will be performed by Dr. Petra Klinge also in Baltimore, but we need to get Meghan there as soon as possible for a consultation.

We are unsure how we will accomplish this financially, but nothing is impossible and we love our friend to the end of the earth.

Following the surgery for Tethered-Cord, Meghan will rest and recover before having a Spinal Fusion surgery peformed by Dr. Frasier Henderson in Baltimore. This surgery will fuse her C1 and C2 vertebrae, stabilizing her neck and relieving pressure from her brain. It is a common experience by those who have undergone this surgery that their normal pain level goes from an 8-9/10 down to a 2-4/10.

One day while we were watching her dogs Waverly and Dakota run in the park, Meghan told me that she dreamt of being able to run in and out of the trees with her dogs for just one minute. With this surgery, that would be a real possibility.


What Meghan Needs From You

If you are reading this, donate $1. There will be friends, family and strangers who will donate much more, but most people will not be able to. If a thousand people see this and donate $1, that $1,000 will cover roundtrip travel to her first surgery, two consultations or just a lot of milkshakes from Five Guys, which Meghan loves.

It is not easy to understand what Meghan is going through by reading scientific reviews of her symptoms, or even reading this GoFundMe campaign. But when you see it with your eyes, it is right there; she is a wonderful person, and she is in so much pain. Let's succeed in raising the funds Meghan needs to enjoy some of the most basic things, like looking at the clouds.

All donations made to this GoFundMe campain will go towards:

- Major surgery for Tethered-Cord with Dr. Petra Klinge
- Major surgery for Spinal Fusion with Dr. Frasier Henderson
- Flights, hotels, Air BnBs, Ubers and expenses related to travel for surgeries
- Service dog training through Compass Key Organization for Waverly, her energetic and loyal Australian Blue Heeler
- CT scans needed 
- Living expenses during recovery
- Health insurance premiums
- In-home caregiver when needed
- Mobility aids 
- Medical bills associated with consultations, surgery, bracing, orthotics, hospital fees etc.

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Hi All!

Today I'm just lounging in bed blocking out as many sensory triggers as I can (sunlight! loud noises! lots of talking! singing up! bad temperatures! smells! mom talking too much! Dogs barking! AH it's a delicate balance over here, which is why you haven' heard from me, Meg directly on this platform. Honestly, getting my computer out and up and finding a comfortable position to write and prop my head while making sure my brain and eyes are working well enough that I can focus and see the monitor without triggering anything. Geez, do these thoughts go through your head every time you have to do something too? #metoo?

Saying howdy because I am trying to come up with a strategic way to give you guys updates. I know each of you want to know where I am at in this process, why things are the way they are, how the search for insurance is going, how I am being cared (and a lot of times not cared) for.. I am trying to share, but only have so much energy during my days. Most days my energy goes into managing pain, spending time in meditation and with spirit, trying to get outside to feel the earth and making my mind happy.

I really enjoy having Skype/FaceTime hangs with you guys near and far, it feels like I have a visitor in my little cave down here, keeping me company and bringing me chick-fil-a fries and milkshakes. (THIS IS NOT ON THE ANTI HISTAMINE DIET, yes I know). But these hangs take A LOT out of me. So, then I have to shut down sensory things again and calm the pain and try to recharge my energy enough to do the next task at hand.. which is usually an epsom salt bath.

does that make sense?

Having said all of that, let me ask you, would you rather see a few photos of my days (think instagram ) and a small caption? Updates from friends who speak with me? Short awkward video updates? Sign Language? Telepathy?

Owls? I don't think I have the energy for owls now that I really assess that. However, I feel like Waverly is smart enough to take a hand written note to each of you and then come back home. I will look into this.

Ok, let me know and I'll keep y'all better updated.


Follow along more here : https://www.instagram.com/meghan_m_hill/

What I do with my spare time : http://meghillphoto.com
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Community, Surgery Cost & Health Update

Hi out there!!

Hey everyone! Thank you so much for all of the amazing donations to our GoFundMe campaign for Meghan. It is so special to us seeing the number gradually going up every day knowing we are closer to facilitating her medical needs.

We apologize for not thanking you earlier, but life happened.

I don't have a direct message from Meghan as she has not been awake much or feeling well the last few days.

Meghan's POTS and MACD (Mast Cell Activation Disorder) symptoms have been rough, to say the least. Daily, her neck has been dislocating by itself. Combined with swelling, it has been difficult and uncomfortable for Meg to breath properly. Her pups Dakota and Waverly (aka Waver Cakes) got to swim in a beautiful pond this weekend, so they are very happy to be close to their mom and keep her company as she struggles to get more than 2 hours of sleep a day.

The search for health insurance continues and we trudge on towards surgery and consults.

We received a quote for the Tethered Cord (TC) surgery two days ago. $43,076. This is the cost of surgery with no insurance, out-of-pocket.

While we continue to learn more about the procedure, travel, and facilities, we are trying to connect with Mayo Clinic. This is where Meghan was originally diagnosed with EDS (and other complications) so they know her personally and are also more familiar with EDS than anyone available locally.

With Meg's symptoms from MCAD lately, her condition is getting out of hand. Mayo will be able to have her stay on campus for a short period while running diagnostics that will help her and all of us understand what's going on in real-time. This will give us a broader and more detailed view heading into the TC surgery. All of it is connected somewhere.

To be honest, we don't have enough funds (yet!) to pursue either path for our friend, whether surgery or MCAD diagnostics first.

We appreciate you all to the ends of the earth for donating and talking about Meghan with your friends. Maybe it would be okay if we ask one more favor?

I noticed that almost 10,000 people have viewed our campaign. That is amazing!!! We have an idea we are working on to get it in front of more people, but would you mind sharing it again? This time asking specifically for one of your friends to share it and donate $1, asking their friend to do the same.

Think about it: if we could get you to do this after reading, if we could get 10,000 more people to see the page and simply donate $1, we could arrange for immediate, ass-kicking, healthcare action. She's in pretty bad shape. Not $5 or $10, or ever $20. Everyone could donate only $1.

This type of community effort is what gives Meghan hope for her health and future, as she has often been made to feel shame and embarrassment for her disorders.

It's so easy nowadays with social media!! Come on you guys!

We just need to come together. Don't skip over this, just click share. If you can't donate or don't want to (totally cool by us!!) please share it. GoFundMe is amazing in a thousand ways but it is hard to get strangers reading your campaign. It would mean the world to us.

Thank you for taking the time to read this. You're family.
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Update #2 family!

I want to say thank you to everyone who has contributed to our campaign to assist Meghan. Our healthcare system in America is not designed to provide actual care, so it's absolutely necessary to gather all of our friends and friends-of-friends in order to help those of us who are hanging onto the edge of the cliff with our fingertips.

Thank you.

While walking on a trail today, I came across a tree which had a hand-painted sign hanging in it's branches. Only a few words were painted across it.

"Good things take time."

Let's keep Meghan in our thoughts long after we have made our contributions to this campaign, and cross our fingers and toes that her body can be patient.

Before I share something from Meghan with you, I wanted to kindly ask one favor. You have already done so much, but it will be an even greater help if you could please make sure to leave a comment with your donation.

If you have already donated, you should be receiving this update in your email. Please come back to our campaign page, "Miracle For Meg," and leave a comment at the bottom of the page. If you follow her on Instagram, are a long-time friend or new acquaintence, or are just passing by to help a human out, please leave a comment and say hi. It will help bring more views to the page, and I know for a fact it will warm Meghan's heart to hear from you.

From Meghan:

"Reaching out and asking for help has always been difficult for me. As a nurterer, empath and feeler, I would much rather nurture someone else instead of sitting back and letting myself be loved and cared for.

It's humbling, but this time it wasn't hard.

In a little over 24 hours you all have given me so much hope for my future. Five thousand! Five thousand dollars have been raised already, and that brings me so much closer to the tethered-cord surgery than I was before.

Us with Ehlers-Danlos Syndrome have strength like no other.

Most of us are quiet, caring, nurturing and extremely talented people. We get ridiculed, cussed out, thrown out of malls for our mobility devices like my Segway, put in psych wards, undergo insane surgeries... and still we rise.

We refuse to let this defeat us and we fight every single day of our lives. This condition is devastatingly under-researched that most of us are in the same position I am in, unfortunately.

Our whole lives, doctors have dismissed us, called us crazy and said to us: "it's all in your head." Well, it's not. It's in our DNA. It is how we were built and there is no cure.

Most of us have no idea what we will have to face in this lifetime because the connective-tissue of each warrior with EDS fails in different places at different times.

Mine started with my knees, but I have friends who started with their gut, their neck, heart, or lungs. Each time you reach a new level of pain and discomfort you think, "okay, this is as bad as it's going to get." Then the next day, you wake up and a new threshold of pain has to be crossed.

This Christmas, I ask you to share this GoFundMe campaign with your friends and family. Not only for me, but so we can bring the necessary awareness of Ehlers-Danlos Syndrome into our communities.

It is under-diagnosed and we need all the help and support we can get. Do some research and you might find some answers for yourself or a friend who is experiencing symptoms.

I'll be sharing more in the days to come, but I'm able to sit up a little bit today and just wanted to say hi and also thank you for loving me and helping me live (and maybe walk again!)"
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Update #1 Amigos!

It was a mere three hours ago we had to re-write the entire campaign after losing it all to a browser refresh, and ya'll friendly people have already donated $1,640 to help Meghan with her emergency surgeries.

We are so thankful for your giving. Do you think we should do an event? Perhaps in the style of Michael Scott's Dunder Mifflin Scranton Meredith Palmer Memorial Celebrity Rabies Awareness Pro-Am Fun Run Race For the Cure?

Here's something we can do... break down some numbers to show you how close we are to our goal! It just takes a little bit of community.

In three hours we have raised $1,640. That means if we continue to raise money at this rate, we will have met our goal of $100,000 in seven days. SEVEN DAYS!

Meghan's life will change. With your help.

Please share this campaign on your Facebook feeds, your Instagram stories, in your Tweets, text it to your friends, share it with your family.

Okay, enough of the rocket science. Here's a message directly from Meghan to everyone who has donated so far:

"Guys, I can’t believe you have already helped me get to $1,640! WHAAA!!! THANK YOU. I am sitting over here refreshing my screen like it’s a magic button and everytime the browser refreshes I see another person I love and just cry. I am humbled. I am grateful. I AM SO GRATEFUL. THANK YOU!!!!!!!"
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$26,315 of $100,000 goal

Raised by 391 people in 9 months
Created November 16, 2018
Fundraising Team
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