Monthly Archives: November 2020

By Adam Owens, WRAL anchor/reporter

A 74-year-old Raleigh man spends an average of two weeks a month traveling around the world delivering stem cells or bone marrow to patients as part of Be The Match, a volunteer-based donor program.

According to Troy "Davis" Moore, Be The Match uses a database of 135 countries to find life-saving bone marrow or stem cells for patients with leukemia and other blood diseases. The stem cells are delivered from donors to patients around the world by volunteers like Moore.

Moore said, when he retired 17 years ago, gardening and working around the house just wasn't enough. His friend, who was already a volunteer courier with Be The Match, told him about the opportunity.

To date, Moore has logged more than 5,000 hours as a volunteer courier. He has traveled as far as London, Barcelona, Croatia, Portugal, Singapore and Taiwan.

On Thanksgiving week, Moore will travel to South America to pick up blood stem cells and deliver them to a patient in the United States. He had to get a rapid COVID-19 test before his trip.

"It's been a lot more challenging during COVID-19 because the rules have changed so much in these countries," said Moore, explaining he recently ran into some trouble in Croatia when he hadn't had a coronavirus test in 72 hours.

Moore said, although he doesn't get to meet the families he helps due to confidentiality, the job is incredibly special. In an interview with WRAL's Adam Owens, Moore described a trip he made on Christmas Day, 10 years ago, to deliver bone marrow from the United Kingdom to a hospital in Columbus, Ohio.

Moore said a nurse was walking him through the hospital hallways when she tapped on his shoulder and pointed to a patient room. Inside, he saw the parents of a child waiting for a transplant. "I have children and I could only imagine," Moore said. "They were just pacing down the room, waiting for it."

Moore said he plans to keep traveling until he can't anymore. Volunteering works well for him, he said, especially now that his children are grown.

Some people might get caught up in the adventure of travel, Moore said, but he's usually only in another country for one day.

"At some point, you realize that's not what it's all about," he said. "It's about getting [a cure] to someone."

Read more:
Raleigh man delivers stem cells to patients around the world - WRAL.com

Newswise CLEVELAND Three college graduations. Three family weddings. The births of two grandchildren.

Andy Superman Simon has cherished each of these milestones since he was diagnosed five years ago with a glioblastoma multiforme (GBM grade 4), one of the deadliest and most challenging cancers to treat. GBM patients typically survive an average of 12-15 months. Only 6.8 percent of GBM patients survive five years, according to the National Brain Tumor Society.

But the Superman of University Hospitals Seidman Cancer Center who memorably donned a full costume for his final treatment in September 2016 and is free of cancer today with no recurrence is anything but typical.

I feel incredible, says Simon, now 56. I flew through treatment with ease, because I had the best team and the best surgeon. The way I see it, I had cancer, I dont have it.

The crushing headache, similar to a migraine yet inexplicably and mysteriously different, struck early one morning in November 2015. Pulling out of his driveway to head to the ER, Simon was equidistant from two different hospital systems. He and his wife believe that fateful turn to come to UH Ahuja Medical Center, and then UH Seidman Cancer Center, has made all the difference.

If we hadnt gone to UH, I honestly believe in my heart that Andy wouldnt be here today, said Amy, Simons wife.

Neurosurgeon Andrew Sloan, MD, Director of UHs Brain Tumor & Neuro-Oncology Center and the UH Seidman Center for Translational Neuro-Oncology, diagnosed the large mass in Simons brain as a GBM. He performed a craniotomy on Simon using 5-Aminolevulinic Acid (5-ALA), an experimental agent that improves the surgeons ability to identify the tumor. Dr. Sloans own surgical trial assessing this agent was one of only a handful of studies in the United States at the time, though it is now approved for use throughout the US by the FDA. Simon took the 5-ALA prior to surgery, which causes the cancer cells to glow hot pink, for more complete removal of these aggressive, invasive tumors.

Radiation and chemotherapy are the standard of care following a craniotomy for GBM.

Simon also took advantage of a novel phase I clinical trial that involved genetically engineering his own blood cells to express a mutant protein that made them more resistant to chemotherapy enabling him to safely withstand steadily higher doses of toxic chemotherapy through six rounds. While this phase I trial was designed only to show safety and feasibility, the median survival of the participants was 3.3-fold higher than anticipated based on case-matched historical controls with GBM undergoing standard treatment.

A new clinical trial, funded by a $2.3 million grant from the National Cancer Institute and based on the gene therapy Simon participated in, will open at UH Seidman Cancer Center in the next few months.

Andy has been a champion, Dr. Sloan says of the poster-boy for this trial, noting that five-year GBM survivors commonly experience recurrence. Hes a real fighter.

This treatment is really a game-changer. This could be the new standard of care. Its really exciting and very promising.

For the last several years, Simon has celebrated with a big party complete with a photo display of his milestones. He was planning a blowout celebration this year until the pandemic struck.

There is hope, says Simon. I have too many things to fight for, and to live for. Ive gotten too far. Im going to be a statistic for the other side. Every day is a milestone really.

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About University Hospitals / Cleveland, Ohio

Founded in 1866, University Hospitals serves the needs of patients through an integrated network of 19 hospitals, more than 50 health centers and outpatient facilities, and 200 physician offices in 16 counties throughout northern Ohio.The systems flagship academic medical center, University Hospitals Cleveland Medical Center, located in Clevelands University Circle, is affiliated with Case Western Reserve University School of Medicine. The main campus also includes University Hospitals Rainbow Babies & Children's Hospital, ranked among the top childrens hospitals in the nation; University Hospitals MacDonald Women's Hospital, Ohio's only hospital for women; University Hospitals Harrington Heart & Vascular Institute, a high-volume national referral center for complex cardiovascular procedures; and University Hospitals Seidman Cancer Center, part of the NCI-designated Case Comprehensive Cancer Center. UH is home to some of the most prestigious clinical and research programs in the nation, including cancer, pediatrics, women's health, orthopedics, radiology, neuroscience, cardiology and cardiovascular surgery, digestive health, transplantation and urology. UH Cleveland Medical Center is perennially among the highest performers in national ranking surveys, including Americas Best Hospitals from U.S. News & World Report. UH is also home to Harrington Discovery Institute at University Hospitals part of The Harrington Project for Discovery & Development. UH isone of the largest employers in Northeast Ohio with 28,000 physicians and employees.Advancing the Science of Health and the Art of Compassion is UHs vision for benefitting its patients into the future and To Heal. To Teach. To Discover.is the organizations unwavering mission. Follow UH on Facebook @UniversityHospitalsand Twitter @UHhospitals. For more information, visitUHhospitals.org.

About University Hospitals Seidman Cancer Center

UH Seidman Cancer Center is the only freestanding cancer hospital in Northeast Ohio, where all clinicians and staff are dedicated to the prevention, diagnosis and treatment of cancer while researching new and innovative treatment options through clinical trials. Nationally ranked cancer care is also available to patients through the 11-country region at 18 community-based locations. Our UH Seidman specialists make up 14 cancer-specific teams focused on determining integrated care plans tailored to patients needs. UH Seidman Cancer Center is part of the National Cancer Institute (NCI)-designated Case Comprehensive Cancer Center at Case Western Reserve University, one of 50 comprehensive cancer centers in the country. Patients have access to advanced treatment options, ranging from a pioneering stem cell transplant program founded more than 40 years ago and a wide range of immunotherapy to the first and only proton therapy center in northern Ohio for adults and children. Go to UHhospitals.org/Seidman for more information.

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A real life Superman celebrates 5 years of survival from one of the deadliest cancers - Newswise

Famous museums, like the Guggenheim in New York City or the Louvre in Paris, often reside in imposing buildings. Theresa Rayners USS Shenandoah Museum lives in a refurbished camping trailer towed behind a pickup truck. But inside this humble trailer is a priceless collection of memorabilia recalling the U.S. Navys first rigid airship, all lovingly curated and cared for by this Ohio woman with a passion for history and preservation.

The 680-foot-long USS Shenandoah was the pride of the U.S. Navy when christened in 1923. Its mission was to provide airborne surveillance for the fleet; to prove its capability, in 1924 the Shenandoah embarked on test flights across the United States. Soon, mayors, governors, and congressmen were requesting that the Shenandoah fly over their regions. In 1925, the airship was ordered on a tour of Midwest state fairs; it was on this trip, on September 3, that the Shenandoah was destroyed in an early morning squall above southeast Ohio. Of the 43 men on board, 14 were killed, including the captain and four other officers.

Engine parts, food from the galley, and personal effects of the crew were strewn about in fields and forests; shortly after the crash, thousands of looters rushed to the site and scavenged anything that could be torn loose or taken. The Department of Justice and the Ohio National Guard arrived to secure the area in late afternoon, but by then the damage was done. Government officials took a dim view of this rampant theft. In the weeks following the disaster, four truckloads of Shenandoah items were confiscated by federal agents in door-to-door searches throughout the region. Despite these efforts, many of the items became treasured family heirlooms, displayed for decades in parlors and living rooms. These are the artifacts that found their way to Rayners homemade museum on wheels, where visitors can see them up close and hold a bit of history in their hands.

We still get donations after all these years, says Rayner, like when someone is clearing out an older relatives home, and they come across a piece of Shenandoahs framework in the attic. Some families had these things hidden away for decades, fearing the government might come for it someday.

Rayners late husband Bryan grew up near Neiswonger Farm, where the bulk of the wreckage fell. As a boy, Bryan collected anything he could find relating to the wreck of the Shenandoah. His family has a connection to the event: The Rayners, along with other local residents, sold soda pop and water to the thousands who traveled to view the site.

News clippings, photographs, and pieces of the ship continued to accumulate in Rayners Garage in Ava, Ohio, the familys towing business. Bryan had quite a collection when we got married, says Rayner. And the couple showed the collection to anyone who asked to see it.

The idea of a more permanent museum came up after the Rayners were asked to set up a Shenandoah history display in a local store window. A portable museum was proposed, and someone traded the Rayners a used travel-trailer that fit the need. A neighbor built custom glass display cases, and other donated materials soon arrived. The USS Shenandoah Museum was ready for the road in 1995. The museum-on-wheels made the couples collection accessible to a whole new audience. We started visiting schools, scout meetings, church socials, and we gave tours of the museum to people just passing through, says Rayner. The increased exposure resulted in more donations and acquisitions. The Rayners bought a larger trailer when the collection outgrew the original.

Treasures displayed inside the museum include various pieces of the ships duralumin framework, sections of the silver outer cover, fragments of the airtight gas cells, plus assorted ropes and rigging. Items from the ships galley include cups and plates used by the crew, plus a sugar bowl with the sugar still inside. Theres an impressive scale-model of the ship, and original sheet music of the mournful song The Wreck of the Shenandoah by Maggie Andrews.

During the Depression, some people repurposed their Shenandoah relics into household items. We have a lampshade made from Shenandoah canvas, says Rayner. When this particular woman needed to replace a tattered lampshade, she stitched up a new one made from fabric she recovered from the wreckage. Theres also an aluminum wash basin from the ship that had been converted into a hanging planter, eventually discarded by the owner. We found that one behind a house in some weeds, recalls Rayner.

Occasionally, the Rayners would buy pieces at local auctions and rummage sales. Bryan was late for his own surprise 50th birthday party because hed heard that a six-foot-long section of Shenandoah framework was to be sold at an estate auction that day in a nearby town. He won the bid, and that relic is on display in the museum today. (Bryan died in 2013.) Rayner gets frustrated when she hears about items that have been discarded by families unaware of the value. To the untrained eye, what appears to be a worthless fragment of metal or canvas may be a piece of American aviation history.

Rayner gets the most satisfaction out of hearing the personal stories associated with the treasures. She tells visitors how the Shenandoahs captain, Lieutenant Commander Zachary Lansdowne, refused to leave his post during the storm. As the ship began to break up, he realized the control gondola was likely to rip loose from the hull. Lansdowne told the men around him to save themselves, and two men quickly climbed the ladder into the hull to safety. The gondola wrenched loose from the ship and fell to earth, killing Lansdowne and six other men who remained at their posts.

A farmhouse near where the gondola fell is empty today, but still standing. The farmer living there on the morning of the accident set up an aid-station in his kitchen for the airships survivors; his back porch served as a makeshift morgue until the coroners arrived.

Since Bryans death, Rayner shows the museum by appointment only. She guides visitors to the various wreckage sites, pointing out the hand-carved block of sandstone off Shenandoah Road that marks the exact spot where townspeople recovered Lansdownes body. The captains U.S. Naval Academy class ring was allegedly found there 12 years after the accident, grown into the stem of a mustard plant. In 1937, the federal government dedicated an impressive granite and bronze memorial in nearby Ava. The once-isolated Neiswonger Farm is now traversed by Interstate 77. Keen-eyed motorists may catch a glimpse of an American flag flying next to a donated sign in a meadow on the west side of the highway near mile-marker 32, a simple reminder of the history that took place there.

In 1991, the Rayners met Peggy Lansdowne Hunt, the daughter of the Shenandoahs captain, who was visiting Noble County to dedicate a memorial. During Hunts visit, the Rayners were able to share their collection with her. That was a turning point for me, says Rayner, meeting someone who was directly affected by this tragedy. Its one thing to know names, dates, and places. Peggy Lansdowne was just three years old when her father died. That changed her life forever. Thats something you have to factor into history.

Rayner still hopes for mementos from an event that occurred almost 100 years ago. There may be prizes still packed in an attic, awaiting discovery.

Read this article:
The Museum That Fell From the Sky | History - Air & Space Magazine

Detroit Lions Senior VP of business development Kelly Kozole works with her daughter, Morgan, who has a rare neurological disorder called beta-propeller protein-associated neurodegeneration, or BPAN.Michael Rothstein

TROY, Mich. Wearing a white T-shirt with a massive star in sparkling shades of pink, yellow and seafoam green on the front, Morgan Kozole sits in front of a fold-up chalkboard in the living room of her familys Detroit-area home and starts to draw.

Using pink and yellow chalk, she sketches Mickey and Minnie Mouse. The Disney characters are dominant fixtures in the 5-year-olds life and therefore become a soundtrack for the Kozole family: Morgan constantly saying Mickey, with her long, blond ponytail bouncing to whatever song happens to be playing on the Mickey Mouse Club.

These are the two Mickeys, Morgan says, pointing to the chalkboard. Her mother, Detroit Lions senior vice president of business development Kelly Kozole, explains that this is her way of communicating that she would like a visitor to draw Mickey too. If its close, Morgan accepts it. Another Mickey to fawn over.

For Morgans birthday earlier this year, the family went to Disney World. On this trip, the Kozoles saw what they had longed for: the potential of progress.

She knew where we were. She knew Mickey Mouse, Kelly said. Before, she wouldnt go to the characters, and now shes jumping up and down, hugging. She really, along those lines, is also really into birthdays.

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The Happy Birthday song. Before that, she was just kind of looking. Sometimes it was too much for her with everyone singing sometimes loud noises are too much. This year, we had to sing Happy Birthday to her three times.

Birthdays, for children, are happy occasions reasons for grand celebrations of progress toward adulthood. For the rest of Morgans family it is more complicated.

Morgan has a rare neurological disease called beta-propeller protein-associated neurodegeneration, known as BPAN. Its a disorder, more prevalent in girls than boys, that causes delayed development and seizures, communication issues and, sometimes, motor dysfunction. Its unclear exactly how many people are living with BPAN worldwide due to its rarity, although Dr. Sami Barmada, a scientist at the University of Michigan studying BPAN, said a rough estimate is about 500 to 600 people.

Its rare enough that Dr. Henry Paulson, the director of the Michigan Alzheimers Disease Center, said there are experts in neurodegeneration who are unfamiliar with BPAN. While Kelly is trying to advocate for her daughter and others with BPAN through fundraising for research, science only moves so fast.

The Kozoles understand that. So birthdays for the family arent always happy. They are a reminder of what could come.

That ticking time clock, Kelly said. Every birthday isnt exciting for me for her. Because its one year closer to when this bomb is going to go off.

BPANs rarity makes the reality heartbreakingly simple: There are very few effective treatments, little research and no cure. As Morgan learns how to organize her Peppa Pig characters and learns new words on her iPad her future looms.

At some unpredictable point in Morgans teen and adult years the average is around age 25, according to Barmada development will just stop. Progress will decline and, in some cases, disappear. Those afflicted with BPAN begin suffering from progressive dystonia parkinsonism making it difficult to walk, talk or stand.

Any day, Kelly said, it could be like, Oh, your daughters gone.'

WHEN MORGAN WAS born on Jan. 12, 2015, she was, largely, a healthy baby. She was a little jaundiced but nothing worrisome.

When she would go to the doctors office for shots, Morgan didnt cry. It was a little abnormal, but when youre a parent of a young child no crying is viewed as a minor miracle. Kelly and her husband, Kevin, took this as a sign of a tough kid. Nurses even said how great it was.

Looking back, it was a warning sign something was wrong. BPAN causes a high pain tolerance. Before long, more concerns popped up. Morgan wasnt crawling at nine months, wasnt walking at a year. Expected milestones passed without Morgan reaching them. Kevin and Kelly put her in therapy in late 2016 to work up to these childhood progressive traits and began researching potential causes. They wouldnt find an answer for more than two years.

Morgan Kozole suffers from BPAN, a rare neurological disorder, but still loves the same things any 5-year-old would, including the iPad and her favorite character, Peppa Pig.Michael Rothstein

She was diagnosed with cerebral palsy at first. One doctor diagnosed her with that, and then another, our neurologist said she doesnt have that, Kelly said. Then there was speculation but not a full diagnosis she had autism, so we did all the tests for that.

So through this kind of journey of trying to find out what was wrong, it was exciting that she didnt have something that you were going to this test for but you still had so many more questions as you were eliminating all these potential diseases that she could have.

Befuddled, they began genetic testing, and in November 2018 received a letter about a mutation on Morgans WDR45 gene. Kelly Googled it, stumbled upon BPAN and freaked out, calling their neurologist. The neurologist told Kelly not to worry BPAN was very rare, and Morgan didnt have it.

Doctors diagnosed her with epilepsy because of seizures. Morgan took Keppra, which helped accelerate her vocabulary to about 50 words, typical for a 1-year-old, when she was 3. Then doctors said, no, it wasnt epilepsy, either.

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Another meeting with another neurologist led to a different diagnosis. Three days after she and Kevin returned to Michigan from Super Bowl LIII in February 2019, they received a call. Doctors figured out what was wrong.

It was BPAN.

In my mind, its worse than cancer, Kelly said. How is this even possible? That this can even be so painful for kids later on in life. You try so hard to gain all these abilities, and then early adolescence or early adulthood, its just [gone] one day, and Ive seen a lot of these stories.

Theres a BPAN Facebook website, and thats where the doctors sent us. Theres no cure. Theres no therapy. Go to this website. Thats what I was told.

FOR MONTHS KELLY cried, angry and heartbroken. The Kozoles initially told their families and no one else.

In May 2019, Kelly went to her first Neurodegeneration with Brain Iron Accumulation (NBIA) conference. She met other parents, heard their stories and began the new normal.

She used her skills organization, fundraising and business to brainstorm ways to help. Hardly anyone researched BPAN. Without it, there would be no chance for a cure not in Morgans lifetime, which could reach her 40s, and not in the lifetime of those who might come after.

Kevin Kozole, husband of Lions senior VP Kelly Kozole, plays with his daughter, 5-year-old Morgan, who suffers from a rare neurological disorder called BPAN.Michael Rothstein

She shared what was happening with her boss, Detroit Lions president Rod Wood, and his wife, Susan, using a website link to explain BPAN. Wood knew something was wrong because of texts and emails saying they had to take Morgan to this specialist or that appointment.

As that was confirmed and became her reality, she is now able to talk about it in a way, Wood said. Because shes full bore on trying to help generate awareness and financial resources to find a cure for it.

She went from the unknown to the very tragic known to, OK, what are we going to do about it?'

Kelly consulted her aunts, both of whom worked in medicine. Linda Narhi worked in biotechnology for Amgen for more than 30 years; Dr. Diane Narhi was the first female chief of staff at Simi Valley (California) Hospital. From talking with another group of fundraising BPAN parents BPAN Warriors Kelly found a guide.

Any day, it could be like, Oh, your daughters gone.'

Kelly Kozole, Senior VP of Business Ops, Detroit Lions

If her aunts had not been resources, she might have joined BPAN Warriors. But Kelly admittedly needs to be in control, and this was her daughter. She needed to manage this herself. She created a nonprofit called Dont Forget Morgan.

Kellys aunts provided guidance, and Wood offered contacts he had in the finance industry and Silicon Valley. Wood and Lions general counsel Jay Colvin sit on the board. Other Lions coworkers with Woods blessing built the website, designed the logo and created social media plans and the first pitch video for Dont Forget Morgans rollout in 2020.

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Progress started with a $15,000 grant to help with a mouse model study at Sanford Research in South Dakota with another, larger, potential grant to come. In recent months, Kelly has focused largely on fundraising, and another parent of a child with BPAN, Christina Mascarenhas Ftikas, has focused on the medical side of the nonprofit.

This is why Im here, Kelly said. Im supposed to be a vehicle to get all of this awareness and hopefully a cure for BPAN so the child one, two, three, five years from now, there is hope.

There is no, Go to Facebook. There is something where you can actually give a parent, Heres the symptoms to look for.'

ABOUT AN HOUR away in Ann Arbor, Michigan, Kaci Kegler and her husband, Brian, had been in the same Facebook community. Kelly, new to the group and looking for a nearby connection, wrote Kaci a message.

Hey, my daughter was just diagnosed, could we connect?

Kaci understood. She did the same thing, reaching out without success in 2016 after her daughter, Elle, was diagnosed. Kaci wanted to be a resource.

They talked for an hour. There wasnt much Kaci could say to soothe her. Kelly pinged a year later with another message: Im starting a non-profit. Kaci offered to help.Despite suffering from BPAN, Morgan is like any other 5-year-old who enjoys playing with her brother, Connor.Michael Rothstein

Days later, on Feb. 28, Kaci and her husband, Brian, an assistant athletic director for development at the University of Michigan, had their yearly fundraiser for BPAN research on Rare Disease Day at Pizza House in Ann Arbor. They met a doctor who had a connection to researchers at Michigan.

I literally came home and texted [Kelly] and was like, Oh my gosh, we may have inroads, Kaci said. We just started texting. I have never met Kelly face-to-face. We still havent. But weve texted a lot and weve emailed quite a bit.

It just kind of started.

By summer, they went from nothing to putting pieces in place for a full-fledged research project with a two-year, $140,000 grant for Barmada and Dr. Jason Chua to help start to solve BPAN.

Chua was working on the regulation of autophagy, which is the cleaning out of damaged cells, and studying BPAN became a natural extension of the work he had already been putting in. BPAN alters that in neurons. Barmada said Chuas research provided a rare win-win situation to potentially help with BPAN and other diseases, too.

There are a set of questions in BPAN that nobody has the answer to, Barmada said. And Jason and myself, we just seem to be in the right position, the right place to be able to help out.

The goal is to understand what is happening within BPAN itself and how people end up with it while also trying to find therapies for existing patients. Within a year, they are hoping to grow stem cells from people with BPAN in their lab, allowing for the creation of their own stem cells missing the WDR45 gene. Then, they will try to either replace the gene or stimulate autophagy through genetic or pharmacologic means, Barmada said. The hope is this can prevent neurodegeneration.

So far, theyve hired a research assistant to work with Chua, developed tools to manipulate the gene using the genome-editing tool CRISPR and applied for approval from Michigan and the institutional review board to get skin biopsies to obtain stem cells from BPAN patients.

Its a process, but its also a start.

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Since partnering with Michigan and Sanford, Dont Forget Morgan also began working with Dr. Kathrin Meyer, a researcher at the Center for Gene Therapy at Nationwide Childrens Hospital at Ohio State.

Solving this disease is going to require more than Jason and Sami, Paulson said. Its going to be a first shot across the bow, but its going to require more than that. Ill say this being in the field for a long time. Scientists who are coming up the pike say they want to look at Alzheimers, want to look at epilepsy. They dont say, I want to look at a rare disease.

The only way to solve a rare disease is to get someone hooked. Sometimes when you hook a really good one, as I think we have with Jason here, you hook them for life and they make a difference.

MORGAN IS BOUNCING around the Kozoles suburban Detroit home on this late August day. They just returned from northern Michigan, and having two kids, especially one with special needs, makes tidiness unrealistic.

COVID-19 changed things. Morgan hadnt been to many of her therapies for months. Online school barely kept her attention. There was concern she would have regression in her learning. Instead, her speech advanced by being around Kelly, Kevin and her older brother, Connor, all day. She has sung more songs recently to help increase her vocabulary. Sometimes, shell listen 20 times in a row.

Even more than that, Connor said. They arent sure how much shes truly learning versus memorization. But it is something.Morgan Kozole has inspired her mother, Detroit Lions VP Kelly Kozole, to marshal researchers and other advocates to develop a cure for BPAN, and perhaps help future generations of children who live with the disorder.Michael Rothstein

The family gathers inside Morgans bedroom complete with a special Haven Bed with a zipper to keep her safe from wandering around at night, when she could accidentally turn on the stove and hurt herself or others as sleep disorders are another BPAN issue. She sits on the floor and starts playing with her small, yellow dollhouse and a fake ice cream maker. Kelly asks for an ice cream. Morgan makes one for herself instead and pretends to eat it.

Later, outside, Morgan kicks a soccer ball and plays a modified game of catch with a squishy football. Football, no surprise, is big. She says hike a lot. She knows that term, Kevin says, laughing.

In these moments, Morgan seems like any other young child. She attends St. Hugo of the Hills Parish School in Bloomfield Hills, Michigan, but has a one-on-one para nanny to help. She interacts with people, often overly affectionate.

Sitting at the kitchen table after playtime outside, she plays with Starfall, a childrens learning app, on her iPad. They hope it accelerates her word recognition. Morgan is entranced watching Farmer in the Dell and using her hands to eat orange slices and Cheerios. She needs a mirror in front of her to provide her a target for her mouth. She listens to books, another way to try absorbing information.

Morgan can now count to 20 and say three sentences in a row. Kelly and Kevin have tried to give Morgan a normal life in an abnormal situation, but they worry about the future what she wont have and wont be able to experience.

But Morgan has changed some of that outlook, too.

Focus on how she is so loving and has so much pure joy. A lot of parents of special needs [kids] say you can learn so much from these kids, and you really can, Kelly said. She is, every morning, just so happy, and Mama! Hugs and kisses to strangers. She has none of those behaviors you learn as an adult where youre not kind to people or you dont want to talk to someone.

She is just open arms, will give you a hug and is so loving, and its like, Wow, this is really what life is about.'

Read the rest here:
A Detroit Lions VP tries to avoid wasting her daughter from uncommon illness - The Shepherd of the Hills Gazette