!!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.