Sahara's Medical Travel Fund

We need your help with travel costs from Wisconsin to Colorado to see a medical specialist for my sweet daughter. I feel it necessary to tell her whole story so you understand how devastatingly fragile my daughter's health is and how desperately we need to make this trip:

My 14-year-old daughter Sahara has always been smart, charismatic, kind, social and full of energy and spunk.

Sahara took her first steps at age 8 months and 2 days. She uttered her first words around the same age. By 10 months, she could say uh-oh, dada, mama, kitty, doggy, grandma, grandpa and quack. 

Sahara began reading at the age of 4. At 10, she finished The Hobbit. At 11, she sailed through the Lord of the Ring series.

In fourth grade, Sahara entered a chess competition at school. She had never played chess before. The night before the competition, her dad taught her how to play. She went on to earn a second-place finish.

She was the child who received comments on her report cards like this:

·         “Sahara has high academic abilities. I enjoy the ‘voice’ she includes in her writing and all the stories she’s completed throughout the year.”

·         “She is a very hard worker and is excelling in all areas. Sahara really brings a lot of knowledge and insight to our class discussions.”

·         “It has been a pleasure to have Sahara in class this year. She is a smart girl and does well in all academic areas…She needs to be challenged to keep her motivated in the classroom.”

But it’s not just her academic achievements that make this mother proud. Sahara is compassionate and respectful to her peers and her elders, and she is a natural leader, as evidenced by report card comments from her teachers:

·         “Sahara has a great peer group and gets along with everyone.”

·         “Sahara is a great friend to her peers and continues to be a great helper in the classroom.”

·         “Sahara is a good role model for her peers.”

·         “Sahara is a wonderful child and loves learning.  In my class she always shows her best effort…Her people skills, compassion for others…will cause her to succeed.”

By fifth grade, Sahara had her future planned. She would take advantage of AP classes and dual enrollment opportunities in high school to earn as many college credits as possible. After high school graduation, she would attend the University of Wisconsin-Madison Engineering School where she would pursue a Bachelor of Science in Mechanical Engineering. Her chosen field would combine her love of math, her strong technological aptitude, and her prowess in problem-solving. And to satisfy her curiosity for computers, she would minor in Computer Science.

Never one to be satisfied with only a portion of the information, Sahara planned to work after school and summers during high school with her dad in the Tool & Die division of a manufacturing facility. She wanted to know how things are made, how her future designs would be produced, and how her future work would influence the manufacturing process.

Sahara’s zest for life kept her active. She played basketball with her friends and even taught her younger brother some skills. She rode her bike all over our small town, exploring the dead ends and alleyways, finding different routes to the beach, getting ice cream at the shop downtown, riding to her aunt’s house to swim. She enjoyed the freedom of being young and carefree. 

Sahara went bowling or roller-skating with her friends during school activity days. She enjoyed skiing with her dad. She loved ATVing and camping with her family. And school dances, oh how she enjoyed them – laughing and dancing with her friends.

And then, swiftly and painfully, that all changed.

On September 25, 2013, at age 11, Sahara saw her primary care physician for a routine well-child check. At that appointment, she received three vaccinations: Td Booster, Meningo (1 of 2), Pertussis/Tdap (1 of 1) and Gardasil (1 of 3).

Two days post-vaccination, Sahara was vomiting and had a headache.

A week post-vaccination, Sahara still had a headache and nausea. She now also had severe body aches.

Three weeks post-vaccination, Sahara was getting fevers. The headache, nausea, and body aches continued to afflict her.

She was sleeping excessively and had extreme fatigue when she was awake. She was dizzy and weak and pale.

By the start of November, Sahara was suffering from a long list of symptoms:

Daily migraines, Sore throat, Severe body aches, Sensitivity to light, Dizziness and lightheadedness, Nausea, Fainting, Pallor, Dark circles under her eyes, Constant abdominal pain, Constant stomach upset, Decreased appetite, Severe joint/muscle/bone pain, Leg weakness/tingling/numbness/legs ‘giving out,' Vision impairment/blurry vision at times, Cognitive processing impairment (easily confused), Problems with concentration, Short-term memory loss, Chest pain
Shortness of breath, Lower back pain, Extreme fatigue, Altered sense of taste, Pins and needles in extremities , Always feels cold/chills, Random low-grade fevers, Trouble hearing and tinnitus, Generalized weakness, Hypersomnia 

Sahara’s primary care physician initially thought Sahara might have mono. The mono spot test came back negative.

Sahara remained symptomatic throughout November 2013. She could barely get out of bed. She slept all the time. She was weak and nauseated and dizzy when she was awake. I had to help her walk to the bathroom and help her traverse the stairs to her bedroom. She missed 11 of 18 days of school that month. And when she did go, it was only at my forcing. Tears would run down her face when I dropped her off; she was physically miserable. My heart broke for her.

Sahara continued to see her primary care physician regularly throughout the next several months. We were told it might be a virus and would resolve itself. It didn’t. We were told it might be mono. The test was negative. We were told it might be anxiety. It wasn’t. We were told it was low ferritin and vitamin D deficiency; supplementation would make Sahara better. It didn’t. The school nurse – though she’d never met Sahara – opined it was school phobia. It wasn’t. And Sahara remained severely symptomatic.

And then in April 2014, after months of multiple doctor appointments and Pub Med research looking for clues, it suddenly clicked that the precursor to Sahara’s poor health was the vaccines. I discovered a case study regarding the HPV vaccine and subsequent Dysautonomia. I shared this paper with Sahara’s primary care physician. She agreed that Sahara’s presentation was eerily similar, and thus, there was a strong likelihood that Sahara suffered an immune-mediated response to a vaccine, manifesting as Dysautonomia.

Sahara is one of the rare few who have suffered a medical injury due to a vaccine.

A referral was placed to the Cardiology Department of Children’s Hospital in Wisconsin. And Sahara remained severely symptomatic.

(I feel it necessary to note here  that I am very much pro-vaccine, which is precisely why I had Sahara get the HPV vaccine. Vaccines are a wonderful medical innovation and have saved countless lives. However, each time we introduce a foreign substance into our bodies, there is risk for injury. Foods, medications, supplements, and vaccines all have risk associated with them. Most often, the benefits outweigh the risks.) 

 At the end of April 2014, Sahara was seen in the Cardiologist Department of Children’s Hospital. The cardiologist unfortunately knew little of Dysautonomia. She did, however, diagnose Neurocardiogenic Syncope (NCS). She instructed Sahara to drink more fluids and eat more salt. And Sahara remained severely symptomatic.

In May 2014, I learned of the Dysautonomia Clinic at Children’s Hospital of Wisconsin. I requested a referral for Sahara. Sahara was seen in the Autonomic Lab on May 21, 2014 for testing for Dysautonomi. She fainted during the Tilt Table Test when her blood pressure plummeted to 39/36. We scheduled our follow-up appointment to review the test results for the soonest the clinic could get us in: August 26, 2014 – a three-month wait. And Sahara remained severely symptomatic.

On August 26, 2014, the doctor in the CHW Dysautonomia Clinic confirmed that Sahara has Postural Orthostatic Tachycardia Syndrome (POTS), Orthostatic Hypotension (OH), and NCS, all under the umbrella of Dysautonomia.  What does this mean? It means that not only does Sahara's heart rate run high, it jumps by at least 50 beats per minute when she stands. Her heart is beating so fast all of the time that it is in a perpetual state of "exercise." It means that when she is upright, her blood pressure plummets. It means that she often faints when she stands up. There is no cure for Dysautonomia. 

Additionally, in November 2015, an expert internest at the University of Colorado confirmed that Sahara has Autonomic Neuropathy -- actual damage to her autonomic nerves. The autonomic nerves are responsible for everything "automatic" that our bodies do: breathing, temperature regulation, heart rate, digestion, blood pressure, sleep, etc. There is no cure for Autonomic Neuropathy.

Sahara remains severely symptomatic.

This is, sadly, devastatingly, her new normal.

Sahara’s illness has rendered her severely disabled. She is unable to attend school. 

Sahara’s original plans for college and career are now unrealistic. This is a painful reality for her. She can’t stand, sit, or walk for long. She struggles with concentration issues, short-term memory problems, and cognitive processing delays, all thought to be from a lack of blood flow to the brain.

Her love of reading has been thwarted. She can’t concentrate on the words nor can she process what she’s reading. The message never makes it from page to eyes to brain.

The stairs in our home became too difficult for Sahara to climb and too dangerous for her to navigate. We moved a bed into our living room. This is where she now sleeps. Her unused upstairs bedroom is a shrine to the girl she once was.  

Riding her bike is no longer possible. Hiking is definitely not an option. Most places we go, Sahara must use a wheelchair now. Her body no longer affords her the strength or stamina for walks about town, amusement parks, museums, not even shopping.

Sahara hasn’t seen her best friend for 5 months now; she doesn’t have the energy. She declines social invitations; she doesn’t have the strength. Simply getting ready to leave the house exhausts her. She has to plan ahead: Shower today for doctor appointment tomorrow. Her wheelchair and handicap placard travel with us wherever we go.

I have to make her food. I have to lay out her clothes. I have to help her shower. I have to wash her hair. This 14-year-old girl should be arguing with me about curfews and clothes and allowance and boys. Instead, she is asking me to help her up from her shower chair. She is asking me to walk her to the bathroom. She is asking me to pick out her clothes.

Sahara cannot be left home alone for more than a half hour. Her fainting and unsteadiness make her a fall risk. This once independent, freedom-loving child now must have a constant caregiver.

 Sahara’s medication regimen is up to 55 pills a day now. That is her new normal. And still, she is unable to be out of bed for long before the tachycardia kicks in, the migraine starts, the tremors take control, the nausea kneads at her abdomen.

 And so now our lives revolve around ‘ologists.’ There is the cardiologist, the immunologist, the rheumatologist, the neurologist, the hepatologist, the gastroenterologist, the endocrinologist. In Minnesota, Ohio, Colorado, Wisconsin, Illinois. Fifty-four appointments and 8,000 miles in 2015 alone.

 Sahara remains severely symptomatic.

But there is good news! Sahara's internal medicine specialist in Colorado has begun some ground-breaking work to find the autoimmune cause of Sahara's Dysautonomia. If we can find the autoimmune cause -- the reason her body began attacking itself after the vaccination -- we can begin a treatment to stop her body's war with itself. There is a chance that we can improve Sahara's symptoms, and thus her quality of life. 

We need to travel back to Colorado from Wisconsin for more testing in June. It's a 2,000-mile round trip. We cannot fly; flying is too hard on Sahara's body. And she cannot be in an enclosed place with others' germs; her body is too weak to fight off infection. We must make the 16-hour drive.

This is where we need your help. Finances are tight. Everything extra we have goes to helping Sahara: medications, travel to see specialists, supplements not covered by insurance. We need assistance with travel costs to Colorado for Sahara's June appointment. Anything you can spare is greatly appreciated. If you have nothing to spare, we understand! You can help by sharing this with your friends. We promise to continue fighting for answers to get Sahara back to a life where she can be a kid again, where she can make plans for her future, where she can fully live.