April Wight's medical fund

My daughter, April, has always loved to dance, coach trampoline, exercise, knit, make jewelry, and work background in TV shows, commercials and movies.  She has also been a mentor to her 7 nieces and nephews, as well as the kids at the tumbling gym for years.  She used to be extremely active in general, but has had to slow down and adjust her life to the medical world.  She was diagnosed with epilepsy while in college and had to fight just to stay in school and graduate.  It was a devastating diagnosis as a young woman just starting her life, but she never let it hold her back.  The chronic disease, multiple hospital visits, medications, and medication side effects were a daily battle, but she dealt with it gracefully.  She worked hard, and was able to complete her education.

Her medical problems have gradually started to get worse.  The past 2 years have been a rollercoaster ride of medical complications.  Her epilepsy turned medically refractory (unresponsive to most meds) and she started having reactions to multiple medications. Unfortunately, this included some very bad reactions.   She went from one medication to the next until there was only one medication left to try to control the seizures.  The next step was to implant a vagus nerve stimulator, which is like a pacemaker for the brain.  There were problems with the stimulator due to the way April healed, so the neurosurgeon had to redo the surgery.   This procedure, along with the new drug, didn’t solve the seizure problem, but did help.

On August 4th, 2016 my daughter was sent in for a complex stress test.  She was having episodes of shortness of breath in recent months and had several tests done to figure out why.  She was sent in for this one last test, and that was the day everything changed. 

I received a phone call telling me that April had a seizure during the test and was being sent to the ER.  I was totally shocked to walk in and see her on life support.  It was explained to me that during the test, April developed stridor/laryngospasms so severe that her throat completely closed which led to her passing out.  After coming to, she told the tech that she felt a seizure coming and tried her rescue med, which didn’t work.  She started having seizures with the laryngospasms and was rushed to the ER where they immediately put her on life support due to being in status epilepticus (prolonged or multiple seizures back-to-back).  Status epilepticus, if not treated promptly, can be fatal.  Seeing my daughter on a ventilator, scared and trying to cry, was a horrible situation.  Once again, I wondered if she would be ok.  She pulled through, her meds were adjusted and she came home with 2 more diagnoses – vocal cord dysfunction and vocal cord paralysis, due to the installation of the vagus nerve stimulator.  The device that is helping, is also hurting, and now they are working to find an acceptable balance.

Aside from dealing with epilepsy, April started developing gastrointestinal problems.  Last year she developed digestive tract paralysis – specifically gastroparesis (delayed stomach emptying) and a small bowel dysmotility.  The digestive tract paralysis ultimately led to malnutrition and dehydration, and a feeding tube was placed.  After several months of the painful naso-jejunal  tube , the decision was made to have surgery for a permanent J tube, which was placed in the small intestine.  Due to complications during and after surgery, she developed severe malnutrition again.  I visited her every day and watched my daughter slowly start to slip away.  The J tube was not working, the doctors were baffled, and her spirit as well as her body, was dying.  The decision was finally made to insert a PICC line for IV nutrition, fluids and nausea medication.   After the central line was placed, I watched her slowly come back to life.  The TPN (IV nutrition) saved her life, and after over a month of hospital stay she was allowed to come home.  She continues TPN every night with fluids and tube feeds as she can tolerate them.  She has had 3 NJ tubes, 3 J tubes, and 3 PICC lines through this ordeal. 

As if this wasn’t enough, April was referred to a geneticist recently who diagnosed her with Ehlers-Danlos syndrome.  This is a genetic disease that causes hypermobility and subluxation of her joints and can attack collagen anywhere in the body.  This is something she was born with, but has only recently started causing noticeable problems and could lead to several future complications.

April finds ways to live between her medical problems, but reality is that her life is complex.  She has an IV pole at home for her TPN, saline, IV meds and tube feeds, but instead of being upset about it she continues to make jokes about her “Christmas tree.”  She won’t tell you when she is in pain and feels unwell, but she has never let her medical problems hold her back from living life to the fullest.  She has been on TPN for 8 months, but even being hooked up to an IV and feeding tube while lugging 25-30 extra pounds on her back, she still helps coach trampoline.  She goes to competitions when she is able.  She never complains, and always has a smile on her face. 

We all know how unpredictable life is.   In a moment’s notice, her life could flip upside-down again, and she could end up on life support or worse.  The week before Thanksgiving  things changed again, and she was admitted to the hospital with a blood infection, which is always a possibility with a PICC line.  She spent another 5 days in the hospital before coming home on iv antibiotics.  April has been fortunate so far, but she knows sepsis is a much higher possibility now.  This type of infection can be fatal. 

April has always been a giving person and is always willing to help those in need.  Baton Rouge was under water earlier this year and even though she had so many problems herself, she felt the need to jump in and help.  With donations, she gathered 40 boxes of food, water, medical supplies, a truck, drivers and money which was delivered to a church there to pass out to those in need.  She identified with those who have chronic medical problems and knew they needed supplies.  It took 4 days to organize and gather, but after the truck was loaded and on its way, she spent a full week recovering.

April has been through so much the past year and continues to struggle.  With all the medical complications and diagnoses, all her doctors agreed that Mayo Clinic was the best option as this point.  She is strong-willed and her goal is to get through everything and hopefully live a more joyful, less eventful life. 
We are hoping she will find some answers and treatment options at Mayo, but her insurance does not cover all the expenses of doctor visits, tests, labs, consults or travel expenses.  She is usually the one donating to others, but my daughter is in need of financial help to cover these expenses as Mayo slowly tries to figure out what is wrong and come up with the best treatment plan.   Even a single dollar, or a simple share of this page will help. 

 

 

Donations

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  • Deb & Ted DeLancey 
    • $100 (Offline)
    • 2 mos
  • Anonymous 
    • $50 (Offline)
    • 2 mos
  • Michael Bivins 
    • $104 (Offline)
    • 2 mos
  • Debbie Moser 
    • $50 (Offline)
    • 2 mos
  • Tara Wood 
    • $20 (Offline)
    • 2 mos
See all

Organizer

April Brianne 
Organizer
Pecatonica, IL
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