Help Kendall LeMay Fight Systemic Gastroparesis!

I am Rebecca Hart & I'm asking for your financial help as well as your prayers.  My daughter Kendall Marie (Hartson) LeMay has been battling since birth with a GI Dismotility disorder that caused her to not be able to hold down formula & food without it all coming back up & often the food was undigested. Kendall had several cases of “stomatitis” as a baby & a young child. As Kendall grew older her GI condition continued to worsen. As her father & I drove her all over NY & VT from GI specialist to GI specialist for test after test with no answers. All that could ever be found was undigested food from her stomach through her small & large intestines with a lot of abdominal swelling. In 2016 Kendall reached a point with Gastroparesis where she was no longer able to withhold keep food down whether it was after or during taking in liquids & or food. Causing her to socially withdraw from friends in fear of being in public embarrassed by her uncontrollable yet unseen illness. Kendall also at that time lost her career passion as a Realtor that she loved, enjoyed & was good at which gave her much self pride.  As of March 2017 NYS Disability & the Social Security Administration deemed Kendall to be 100% disabled by her condition. Leaving Kendall devastated by not only her illness but that it took away her career she loved. In February 2017 she had a gastric emptying study done that diagnosed advanced gastroparesis at that time half paralysis of the stomach. In March 2017 Dr. Adam Abodeely surgically implanted a Gastric Stimulator that had 2 electrical leads attached to her Vagus nerve in her stomach to make her stomach move with electrical stimulation to digest food. Then in 2019 Kendall hit another wall with continued chronic constipation that has also been a life long issue. Leaving Kendall impacted & having to have her bowels cleaned out surgically. She had exhausted all prescribed & over the counter medications to help her digestive system to try to function normally. So in April of 2019 Kendall had a stitz marker study where she swallowed a capsule with 24 rubber markers. She couldn't take any laxatives for 2 weeks prior to the test nor during the week of the test. She had to had X-rays on day 3 & day 5 post swallowing the capsule. On day 5 all 24 of 24 rubber markers were still present in her large intestines diagnosing colonic inertia & indicating that their was no movement in her large intestines & colon. In May of 2019 Dr. Adam Abodeely did a surgically procedure called a total colectomy which was the total removal of her large intestines & colon. Then connecting her small intestines to her rectum. Kendall felt the best she had in her entire life for 6 months post op before hitting another wall with staphylococcus bacterial lingular pneumonia caused by her aspirating stomach contents as well as food & liquids she was taking in orally & landed her admitted in the hospital for IV antibiotics. She then was diagnosed with a florengeal/esophageal swallowing disorder as well as dysphasia causing speech difficulties & short term memory loss. Around April  of 2020 Kendall began to struggle more & more than ever before. Not being able to hold liquids & food down. Not even shakes, protein drinks, water etc. She visited Dr. Adam Abodeely in August 2020 to discuss her issues & he referred her to a team of Endocronologist & Rheumotologist at UVM Fletcher Allen in Burlington VT. Thinking maybe something in those body systems may be the cause to her gastroparesis (as Gastroparesis is always a secondary disease caused by a primary disease) as well as systemic organ death. After much lab work all came back negative & well in those departments. Kendall was then told she didn’t need any further follow up with them going forward. However as months went on Kendall’s oral intake progressively became less & less. She tried everything her doctor told her to do & yet nothing would stay down. As a result she quickly became malnourished as her GI track is unable to properly nourish her body like a normal persons does even if she was consuming a proper diet. So it was decided between Kendall & Dr. Adam Abodeely that he would remove her gastric stimulator due to no gastric movement even with her pace maker at its highest voltage of 10 deeming total stomach paralysis (indicating total stomach death) & at the same time placed a J tube feeding tube into her Jejunal small intestines on 11/16/20. At that point going  forward she would take in formula via an IV pump 12 hours a day to get the nourishment her body needed. On 11/11/21 Kendall met with her dietitian & tube feed nurse to learn how to use her feeding tube. Kendall was overwhelmed with pain suddenly during the appointment causing her to blackout. She was escorted to the ER where she coded as her malnourishment had placed her visceral organs in late stage organ failure from the lack of nourishment over 6 plus months. Fortunately they got her back & stabilized. She was put on comfort care with pain management while she waited for her surgery to have her feeding tube placed a week later. Yet her problems haven't stopped regardless as it is now known that the gastroparesis has spread to her small intestines causing intestinal dismotility & constipation again. As well as Optical Neuritis Meletosis that's caused several lesions in both of her corneas & a lesion on her level 1 thoracic vertebrae. Which causes Kendall to have normal vision one day & then blurred vision another day & somedays where wearing either her contacts or glasses are more trouble than help due to double blurred vision. Kendall began over producing liver bile 6 weeks post operative from getting her feeding tube, which began her having to open the ports in her feeding tube to drain 1-4 cups of painful bile from her intestines. It caused her first feeding tubes balloon to be eaten away by the bile reflux. So on February 5th Dr. Adam Abodeely placed a flesh mount Mickey button J tube feeding tube. A week later 2/13/21 Kendall became overwhelmed with pain & her boyfriend Nolan took her to the ER to find the balloon to the tube had migrated to the inside of her intestines. That tube was removed & a new tube was placed. They both returned home & Kendall connected to her IV pump & feed line for a feeding while sleeping. She was awakened just 3 hours later in horrible pain & them both drenched in body fluids & formula. Kendall found her stoma empty & her feeding tube on the floor at her bed side which it’s balloon had popped. Nolan again rushed her to the ER 2/14/21 & a third tube was placed, blood cultures were taken since her stoma was open to the air. On 2/15/21 Kendall got a call from the ER to return as her blood cultures were positive for the most drug resistant & hardest to get rid of strain of staphylococcus aureus. Luckily it didn’t hit her blood stream & she was sent home on antibiotics for 2 weeks. After all those trips to the ER & the infection, plus ongoing issues Dr. Adam Abodeely had to tell Kendall after 11 years of treating her that he had exhausted all of his knowledge of the condition & that she should find an Advanced GI doctor with a strong discipline in gastroparesis & all of its sister disorders it causes as well find the cause of the gastroparesis. In hopes of gaining a better quality of life back although there is NO CURE for Gastroparesis & there many treatment options medication wise & or surgically in NYC.  Kendall is now under the care of an Advanced GI specialist with a strong discipline in gastroparesis as well as the sister disorders it causes & he knows how to locate the cause of the gastroparesis. Dr. Andy Lui from NYC Presbyterian Hospital at Columbia University. Although the door of 11 years with ups & downs & still leaving Kendall's condition at play & a daily battle she remains hopeful & strong in all efforts in the firm mindset that  she will achieve her goals of a better quality of life with this disease & with  Dr. Lui & his teams help. Kendall’s gastroparesis has become very complex & surgery critical leaving her to need a critical care surgeon due to the 30 surgeries & procedures she's had in her 34 years.  She has been blessed to have Dr. Adam Abodeely as her gastrointestinal (surgeon). After many years of searching for a GI Specialist to help Kendall & we finally found Dr. Adam Abodeely in 2010. He’s helped Kendall tremendously but unfortunately this disease just won’t give up....nor does Kendall. She always ahead of it. Researching, talking to others who also have her condition on Facebook through support pages where she also educates herself on her condition. Kendall is strong & certainly stronger than this disease. She won’t stop until she stops the disease no matter what it takes. Even if it doesn’t end as a fairytale for her, she hopes her fight & her challenging of doctors will bring more awareness to this disease as well as many more treatment options & hopefully a cure someday. But ultimately Kendall hopes that all her efforts with this disease don’t falter in vein not one day even if it means that she helps one person or many or leaves this planet having been one of the most used “lab rats” in this area for this diseases research & treatment development.  

Kendall is a fighter but she's tired. It's a battle everyday. There are many things that can be done in NYC to give her hope & a better quality of life. But we need help.

Kendall's journey to NYC with her beloved boyfriend Nolan by her side begins on April 11th through April 14th for tests & a procedure at NYC Presbyterian Hospital at Columbia. Then a follow up appointment with Dr. Lui on April 21st for results of the tests & procedure. From there Dr. Lui will offer Kendall many medication options as well as surgical options separately or combined that he feels will help Kendall based on the results of her tests & procedure. A double bowel transplant is currently being considered by Kendall depending on her results. We have learned a great deal from Dr. Lui via Tele med.  He is hopefully the answer to our prayers. This disease just takes & takes & again there is no cure. Kendall fights for quality of life & her nourishment are 24/7. After 11 years with the same doctor it is mentally & emotionally overwhelming for Kendall as this feels much like starting from scratch with a new doctor.....which was a nightmare long ago as a child with other GI doctors who couldn't help her. She's been a strong fighter & a courageous warrior through all of this especially the last 4 years in her darkest days with her disease at its worst point yet. So unfortunately Kendall stands at the bottom of yet another mountain, but not alone. Yet with the strength & added courage of her parents who have long been steadfast & at her side her entire life through this fight & never gave up no matter what & are still there & her step-parents who offer love, encouragement & compassion, her greatest joy in life her daughter Reese who always tries to tell mommy how strong she is & how proud of her mom she is & that she has the best mom in the world because no matter how bad her mom may feel she always snuggles her & watches movies & plays with her.....through pain & all. As well as her beloved soulmate who is her strong & steady & who never leaves her side. He fights right along side her adding humor to take weight off of the situation at hand keeping Kendall calm & grounded & always making sure that she knows without a doubt he loves her unconditionally, Her Nolan.

This trip will be the first of many to #1 get her stable, #2 for Dr. Lui to devise a plan for her ongoing care & health as I said before it is not a curable disease.  As everyone knows trips to the city & health care as well as medications are very expensive.  It's not down & back, it's days of testing etc. Many days of hotel rentals, gas, tolls, food, taxi & or Uber expenses & uncovered medical expenses. It is my hope that you can find it in your hearts to help me help my little girl. Who has always been there to help those in their times of need much like her time of need now. 

Kendall is a beautiful woman inside & out & has a beautiful daughter as you all know Reese Ella who will be 10 in June. Reese’s wish is for her Mom to get better & to be able to enjoy her life with her without a feeding tube & with no more pain. Thank you from the bottom of my heart & I promise we will pay it all forward. God Bless & thank you for your help & prayers in advance & stay tuned for updates.