For those just joining us … a quick summation of Mary Ashley’s journey with kidney failure and a rare brain disease (Moyamoya). October 31, 2012 – After helping in the nursery at church and doing homework (very normal evening), Mary Ashley went to bed. November 1, 2012 –Mary woke up at 4 a.m. with severe headaches and was given Tylenol and went back to bed. By mid-morning she still had a headache, was throwing up and was not making sense with her speech or thought process, which led to an ER visit, BP 200/120, three seizures, a stroke (an infarction or blockage stroke, not a hemorrhage stroke) and an emergency helicopter ride to Children’s Hospital in St. Louis, MO. November 1-17, 2012 – Mary Ashley spends four days on a ventilator, nine days in the Pediatric ICU (PICU) and eight additional days on the eighth floor while doctors try to determine the cause of her stroke and next steps to treating the concern. Although questions remained regarding a possible narrowing arteries in Mary’s brain, test results showed Mary was in renal failure, with her kidney’s functioning around 12-15%. Doctors believed renal failure had led to high blood pressure, which, in turn, caused her stroke. Mary began an intense regimen of medications to moderate her BP with hopes of keeping Mary off dialysis until her kidney transplant. November 18, 2012-April 21, 2013 Home in Greenville, Mary adjusts to a new normal of medicines, regulating her BP, doctors appointments, ongoing headaches, extreme fatigue, attending school as able while staying on top of homework from home. Mary’s mom and oldest brother start the testing process to determine possible “live” matches for a kidney donor for Mary. April 22, 2013 – Mary experiences a TIA (mini-stroke) and returns to STL Children’s. While in the hospital the next day, she experiences another TIA … Leading Mary’s doctors to schedule an angiogram (x-ray of Mary’s blood vessels in her brain). The results of the angiogram rock the Barber world once again, as Mary was diagnosed with a rare, degenerative brain disease called Moyamoya. The disease is a progressive narrowing of the blood vessels in the brain causing decreased blood flow, and, in Mary’s case, required surgery. May 13, 2013 – Mary endures a half-day brain surgery designed to increase blood flow to the right side of Mary’s brain. Mary spends seven days in Children’s PICU & 12th Floor. May 19, 2013-Present – Mary’s brain continues to heal from the surgery. Although her medicine regimen was altered a bit after Moyamoya surgery, Mary remains on numerous medicines to control her BP while awaiting the next leg of this journey … a kidney transplant. Mary’s team of neurosurgeons, neurologists, nephrologists (kidney docs ☺) and the kidney transplant team will together determine the right time to schedule the transplant, but we are hoping she will be cleared by the neurosurgeon by the end of the year. Mary’s mom, Lisa, her older brother, Ben, and one family friend are all potential candidates for Mary’s kidney donor. Post-kidney transplant, Mary may face another half-day brain surgery (six months later) to correct the degenerative effects of Moyamoya on the right side of her brain. August 31, 2013 – Run Mary Run (runmaryrun), a 5K Glow Run/Walk will be held to benefit the North-Central Kidney Transplant/Catastrophic Illness Fund. HelpHOPELive for Mary Ashley Barber through your support of Mary’s ongoing medical expenses. Registration for the event is $25 (includes a race pack). Visit bit.ly/5kglowrunwalk to register online. Donors of an additional $100 or more will receive a white, short-sleeved race shirt. Please make checks for donations to HelpHOPELive and note “In Honor of Mary Ashley Barber” in the memo line. Donations made via HelpHOPELive are tax-deductible.* Thank you for your support of Mary Ashley and the Barber family! *Contributions are tax deductible to the extent allowed by the law. This campaign is administered by HelpHOPELive, a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. Information: 800.642.8399.
Posted on: Tue, 06 Aug 2013 02:36:25 +0000
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