03/27/2024
My friend Ashley needs some help! If you can donate even $10… it’s a huge blessing! Whether you donate or not, SHARING this post so others can consider helping is awesome!
VENMO: https://venmo.com/u/Ashleyshaw9118
Ashley is a Mom to 3 beautiful kiddos but she is so so sick and needs help with her upcoming surgeries. She is traveling completely alone on a sponsored med flight through LifeLine Pilots to North Carolina next week for surgeries to attempt a jugular stent followed by a shunt that her body desperately needs through a full thoracotomy through her ribs into her lungs.
This chick is seriously amazing but this illness has been absolutely relentless.
Over the past several years of crippling illness, Ashley has gone from a VERY full time family provider (she has her masters degree in social work and worked as a therapist for many years) to mostly blind, bedridden and super scared for her future in the most recent Months. Her healthcare coverage does NOT qualify her for any in-home care or assistance and does not cover any travel expenses at all. The doctors willing to attempt treatment for her are not in Ohio and some are not in network, making her healthcare options very sparse and super expensive.
As a Mom, I know this scenario is terrifying and Ashely could really use some financial help to make this upcoming travel for surgery a little easier.
If you are interested in more details, here is more detailed background on Ashley and her condition:
Ashley went to school and obtained her bachelors degree in psychology and went on to obtain her masters degree in social work both from The Ohio State University. Directly from graduation, Ashley worked locally as an outpatient therapist for over 10 years. During year 7, she began having debilitating symptoms which ultimately led to her being diagnosed with a blood clot in the brain along with a skull malformation where the skull is too small for the brain, known as Chiari malformation. 1 month after diagnosis, Ashley underwent her first brain surgery at The Ohio State University to try and make more room in the skull known as a Chiari decompression with laminectomy. That surgery was deemed as sucess in treating the Chiari malformation although there is no cure for the disorder at this time. She returned to work full-time after 5 weeks of recovery to continue working as an outpatient mental health therapist. About 6 months later, Ashley began having symptoms again including severe headache, ringing in the ears, nausea and vomiting along with severe vision loss. Through a period of 5 months Ashley underwent several diagnostic procedures including 10 spinal taps, special MRIs and other neurological testing and was diagnosed with another brain condition known as pseudo tumor cerbri or more commonly known today as increased intercranial hypertension. Conservative methods for treating this disease were tried for a period of 6 months before they deemed her vision to be at risk for permanent vision loss and said that an emergency surgery was needed known as shunting. Ashley underwent a series of over 20 shunting surgeries at The Ohio State University until her neurosurgeon felt like she was in need of more specialized care by surgeons out of state. Little did Ashley know, this would be the end of her career as a mental health therapist as she was able to hold her job down during all of those brain surgeries. Ashley was then referred to two doctors located in Chicago where she received a brain stent and several other shunting procedures / multiple more brain surgeries to ultimately deem her allergic to traditional shunt materials. Due to this allergy, she was told that shunting would no longer be an option and that she may go permanently blind due to the build up of cerebral spinal fluid behind the optic nerve.
Ashley returned to The Ohio State University where she underwent a handful of additional brain surgeries resulting in a treatment known as bilateral subtemporal decompressions. This surgery encompasses large pieces of skull to be removed above the ear in silver dollar sizes to allow the brain to swell in hopes of treating the continued pressure and swelling of the brain. These surgeries helped for about a year until she started experiencing severe vision loss and repeat symptoms already stated. At this time (2018) Ashley underwent surgery # 50 something on her eyes on a procedure known as optic sheath fenesration which cuts slits in the optic nerves to allow the built up pressures of the cerebral spinal fluid from her condition. This surgery was able to buy Ashley some time before she started experiencing additional neurological symptoms including fainting spells, numbness, dizziness, increased heart rate, feeling like a bobble-head along with other serious symptoms and was diagnosed with another related disease known as cranio-cervical instability.
Ashley attempted multiple conservative treatments for this disorder in an attempt to stay fully functional at home for her children (it’s so hard to care for kiddos when you are sick!!!) but her symptoms became so bad she ended up having to travel to a specialist located in Maryland to perform a cervical fusion on her so that her head didn’t detach from her spine.
During all of this time, Ashley spent weeks to months in the hospital while specialists worked together in teams to try and figure out her best treatment options. It is important to note that during all of these surgeries which by this point (2020) Ashley had suffered from several deep vein thrombosis also known as DVT’s with no known cause.
In 2021, Ashley started experiencing similar symptoms to her head and neck with her lower back and legs. It was deemed that she had lower back instability and had to undergo another fusion to help stabilize the bottom of her back to help keep her from ending up in a wheelchair. While Ashley has been on the journey she has remained an advocate for her children all with autism spectrum disorder making sure all their needs were met both medically, academically and socially. Her husband is who was able to keep the kids at home while Ashley and her father, Tony, would travel to all of these different locations for surgery. Fast forward to 2021, Ashley was informed that there was a possibility of a new of shunt that could be life changing for her. She made the trip out to Pennsylvania where she underwent a total of 7 procedures with the end procedure resulting in a large saddle clot in her lungs also known as a pulmonary embolism. During this time, she was 3 minutes from dying had she not gotten to the hospital in time. This hospitalization ended up being life changing as she had a world renowned hematology doctor who was able to diagnose her with two very dangerous clotting disorders. Since the last shunt was taken out and the result of her PE, she now must give herself injections of a special and very EXPENSIVE blood thinner everyday to keep her from forming additional clots. After the poor results with this shunt, the only options at that time were to perform weekly spinal taps to drain fluid from the brain to attempt to keep pressure low enough to control symptoms and ultimately blindness. With the rare clotting disorder she has, Ashley cannot have any regular outpatient or surgical procedures without being admitted to the hospital to be taken off of her injectable blood thinner and put on an Intravenous blood thinner known as heparin so that she does not develop a clot before surgery as it is not safe to be on blood thinners for any procedure which has resulted in Ashley having to spend a week at a time in the hospital for what used to be a simple outpatient surgery now turned into a week long procedure. Moving forward into 2023, Ashley had maintained her disease with biweekly hospitalizations for spinal taps. Finally, her neurological team said no more. This is not safe practice to continue using a needle and draining her back every 2 weeks for 3 days of relief before symptoms returned. This is where we are as of 2024. Ashley has now come under the care of a world know specialist for her condition located in Winston-Salem, North Carolina. Her health deteriorated very rapidly in the fall of 2023 resulting in blindness, 75 lb weight loss and many other symptoms that have been listed through-out. Her surgeon in North Carolina is the leading expert in her disease and believes he has what she needs to finally receive relief and possibly put her into remission from a debilitating and life-long condition that has changed so many things in her life including quality of life, employment status and many more things. She underwent her first surgery with her neurosurgeon in North Carolina In January and since then has underwent 9 total surgeries in 75 days.
TODAY… as we speak, Ashley is getting ready to travel down to North Carolina alone using a non-profit medical airline service that is free of charge for patients that must travel for medical care. Ashley will be leaving April 1st to undergo at least 4-5 more surgical procedures including venous stenting, a shunt revision, styloidectomies and spinal taps with the possibility of more. This will bring Ashley to a total of 94-96 surgeries in 10 years. Ashley is currently in need of help due to the multiple trips that have already been made with her father and husband to North Carolina this year. Neither one of them or anyone in her support network is able to travel with her or able to financially contribute to this next trip. It is imperative that Ashley make this trip as she is currently in shunt malfunction meaning she is currently losing vision, weight, having changes with cognition and thought processes, experiencing seizures and more. She will be hospitalize at least a week but is expected to be in the area for an undetermined amount of time for recovery and assessment of progress from the neuro surgery staff at Wake Forest Baptist hospital. She is responsible for covering costs of lodging, food and transportation during her pre-surgical appointment and post-surgical recovery which is so expensive all while acquiring thousands of thousands in medical bills. While Ashley has been suffering from these symptoms, she remains an active mother in her children’s lives, volunteering at local nonprofit agencies when she can while also playing an active role in her sons band program as a volunteer as well. If Ashley is unable to get the needed upcoming treatment she will end up with permanent blindness and other irreversible damages to her body that would hinder her from being the amazing and loving mother and friend that she is to so many.
If you can donate, PayPal and Venmo are amazing options and go directly to her with no fees and no one else inbetween:
VENMO:
https://venmo.com/u/Ashleyshaw9118
PAYPAL:
https://www.paypal.me/ashleyshaw9118?locale.x=en_US
