Gary L. Smith of the Journal Star

TOULON A Stark County teenager who has endured a lengthy ordeal from a debilitating autoimmune disorder now faces extensive and expensive further treatment.

BrookeLynn Montgomery, 15, has been an athlete and 2016 Junior Miss Stark County Queen, and a person looking at her would never imagine that she suffers from such symptoms as severe chest pain, headaches, heart palpitations, and fatigue, noted an aunt who has started a fundraising drive for medical and family expenses on gofundme.com.

They call it an invisible illness, because when you look at her, she looks fine, said Patricia Edwards, who lives in Florida. But inside, its like shes running a marathon.

The Wethersfield High School freshman has been diagnosed with Postural Orthostatic Tachycardia Syndrome involving a malfunction of the autonomic nervous symptom. The imposing term reflects a major diagnostic criterion of a heart rate increase of 40 beats per minute or more upon standing.

Brookes resting heart rate is 62, and it would go up over 100, and that didnt even require standing, said her mother, Shelly Montgomery. That would be just turning over in bed.

POTS is not a disease in itself but rather a cluster of symptoms that are frequently seen together, according to Dysautonomia International. It can have many underlying disorders, and symptoms can include low blood volume, fiber neuropathy, dizziness, exercise intolerance, nausea, diminished concentration, fainting, and shortness of breath.

While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD (chronic obstructive pulmonary disease) and congestive heart failure, the organization says on its website.

After symptoms that appeared in 2015 led to discovery of enlarged lymph nodes, it appeared possible that there might be a recurrence from an abdominal tumor that led to removal of Brookes appendix and part of her colon during an earlier health crisis in 2012. But the biopsy was negative, and the POTS diagnosis was eventually confirmed in May 2016 by Dr. Mark J. Holterman, a professor of surgery and pediatrics at the University of Illinois College of Medicine at Peoria.

I have a lot of faith in him. Hes been our saving grace, said Shelly Montgomery. If it had not been for him, I dont think wed be sane today.

Brooke has been in and out of Childrens Hospital of Illinois at OSF Saint Francis Medical Center in Peoria several times for treatments that have included medications, biological response therapy, chemotherapy, and plasmapheresis, a plasma-exchange process. But her case was made complex by allergic reactions to some medications, and the plasma process has become increasingly less effective in reducing her pain, family members said.

In the last four months, she has declined rapidly, and is no longer able to attend school, noted Edward Smith of Toulon, a grandfather. Theyre looking at getting her home tutoring.

The next medical step will be going to Chicago later this month for experimental stem cell-based treatment arranged by Holterman. Shelly Montgomery said Saturday that the doctor was out of the country and the family was still waiting to learn the details of time and place.

Hell be putting things in motion when he gets back, she said. Hes very optimistic. He feels that the (stem cell treatment) is going to do a lot for her.

Because the treatment is experimental, the cost will not be covered by the insurance that has helped with some prior expenses. Even with some fees waived, its expected to cost $5,000 to $6,000, Edwards said on the gofundme page for BrookeLynns Medical Expenses.

In addition, It is unclear at this point how long Brooke will stay in Chicago or how many trips to Chicago will need to be made, she added. Funds are needed immediately to help the family with medical costs as well as travel expenses.

Donations can also be made to the Brooke Montgomery Medical Expenses account at State Bank of Toulon, 102 W. Main St., Toulon IL 61483.

It was very difficult to accept the idea of requesting financial help, said Shelly Montgomery, who is a dental technician in Peoria. Brookes father, Donald Montgomery, is assistant manager at a farm supply store in Kewanee, and the family lives north of Toulon. An older daughter, Alyssa Watt, 23, lives in Kewanee.

But even with some insurance coverage, co-pays and other non-covered costs have been substantial, she said. And the financial impact has been increased by extra trips to Peoria and missed days of work, she added.

Its time to let family and friends help out, she said.

The family is in uncharted territory, she acknowledged, dealing with a condition that has no cure but has been reported to improve greatly in cases when the best treatment is found. The family is determined to find it.

Brooke has a new normal, and its not an acceptable normal. She shouldnt have to go through what she goes through every day, her mother said. Shes such a tough kid. She doesnt just sit and sulk about it. She just wants to go back to school and be a normal kid.

Gary L. Smith can be reached at (800) 516-0389 or glsmith@mtco.com. Follow him on Twitter @Glsmithx.

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Toulon teen with POTS just 'wants to be a normal kid' - Peoria Journal Star