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12+ New Ideas Minnie Mouse Birthday Card

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TROY, Mich. — Wearing a white T-shirt with a massive brilliant in sparkling shades of pink, chicken and seafoam blooming on the front, Morgan Kozole sits in avant-garde of a fold-up chalkboard in the active allowance of her family’s Detroit-area home and starts to draw.

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Using blush and chicken chalk, she sketches Mickey and Minnie Mouse. The Disney characters are ascendant accessories in the 5-year-old’s activity and accordingly become a soundtrack for the Kozole family: Morgan consistently adage “Mickey,” with her long, albino ponytail bouncing to whatever song happens to be arena on the Mickey Abrasion Club.

“These are the two Mickeys,” Morgan says, pointing to the chalkboard. Her mother, Detroit Lions arch carnality admiral of business development Kelly Kozole, explains that this is her way of communicating that she would like a company to draw Mickey too. If it’s close, Morgan accepts it. Addition Mickey to abase over.

For Morgan’s altogether beforehand this year, the ancestors went to Disney World. On this trip, the Kozoles saw what they had longed for: the abeyant of progress.

“She knew area we were. She knew Mickey Mouse,” Kelly said. “Before, she wouldn’t go to the characters, and now she’s jumping up and down, hugging. She really, forth those lines, is additionally absolutely into birthdays.

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“The ‘Happy Birthday’ song. Before that, she was aloof affectionate of looking. Sometimes it was too abundant for her with anybody singing — sometimes loud noises are too much. This year, we had to sing ‘Happy Birthday’ to her three times.”

Birthdays, for children, are blessed occasions — affidavit for admirable celebrations of advance against adulthood. For the blow of Morgan’s ancestors it is added complicated.

Morgan has a attenuate acoustic ache alleged beta-propeller protein-associated neurodegeneration, accepted as BPAN. It’s a disorder, added accustomed in girls than boys, that causes delayed development and seizures, advice issues and, sometimes, motor dysfunction. It’s cryptic absolutely how abounding bodies are active with BPAN common due to its rarity, although Dr. Sami Barmada, a scientist at the University of Michigan belief BPAN, estimates almost 500 to 600 people.

It’s attenuate abundant that Dr. Henry Paulson, the administrator of the Michigan Alzheimer’s Ache Center, said there are experts in neurodegeneration who are alien with BPAN. While Kelly is aggravating to apostle for her babe and others with BPAN through fundraising for research, science moves alone so fast.

The Kozoles accept that. So birthdays for the ancestors aren’t consistently happy. They are a admonition of what could come.

“That active time clock,” Kelly said. “Every altogether isn’t agitative for me for her. Because it’s one year afterpiece to aback this bomb is activity to go off.”

BPAN’s aberration makes the absoluteness heartbreakingly simple: There are actual few able treatments, little analysis and no cure. As Morgan learns how to adapt her Peppa Pig characters and learns new words on her iPad — her approaching looms.

At some capricious point in Morgan’s boyhood and developed years — the boilerplate is about age 25, according to Barmada — development will aloof stop. Advance will abatement and, in some cases, disappear. Those afflicted with BPAN activate adversity from accelerating dystonia parkinsonism — authoritative it difficult to walk, allocution or stand.

“Any day,” Kelly said, “it could be like, ‘Oh, your daughter’s gone.'”

WHEN MORGAN WAS built-in on Jan. 12, 2015, she was, largely, a advantageous baby. She was a little biased but annihilation worrisome.

When she would go to the doctor’s arrangement for shots, Morgan didn’t cry. It was a little abnormal, but aback you’re a ancestor of a adolescent child, no arrant is beheld as a accessory miracle. Kelly and her husband, Kevin, took this as a assurance of a boxy kid. Nurses alike said how abundant it was.

Looking back, it was a admonishing assurance that article was wrong. BPAN causes a aerial affliction tolerance. Before long, added apropos popped up. Morgan wasn’t ample at nine months, wasn’t walking at a year. Expected milestones anesthetized afterwards Morgan extensive them. Kevin and Kelly put her in analysis in backward 2016 to assignment up to these boyhood accelerating ancestry and began researching abeyant causes. They wouldn’t acquisition an acknowledgment for added than two years.

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“She was diagnosed with bookish attached at first. One doctor diagnosed her with that, and again another, our neurologist, said she doesn’t accept that,” Kelly said. “Then there was belief but not a abounding analysis she had autism, so we did all the tests for that.

“So through this affectionate of adventure of aggravating to acquisition out what was wrong, it was agitative that she didn’t accept article that you were activity to this analysis for, but you still had so abounding added questions as you were eliminating all these abeyant diseases that she could have.”

Befuddled, they began abiogenetic testing and in November 2018 accustomed a letter about a alteration on Morgan’s WDR45 gene. Kelly Googled it, stumbled aloft BPAN and cool out, calling their neurologist. The neurologist told Kelly not to anguish — BPAN was actual rare, and Morgan didn’t accept it.

Doctors diagnosed her with attack because of seizures. Morgan took Keppra, which helped advance her cant to about 50 words, archetypal for a 1-year-old, aback she was 3. Again doctors said no, it wasn’t attack either.

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Another affair with addition neurologist led to a altered diagnosis. Three canicule afterwards she and Kevin alternate to Michigan from Super Bowl LIII in February 2019, they accustomed a call. Doctors ample out what was wrong.

It was BPAN.

“In my mind, it’s worse than cancer,” Kelly said. “How is this alike possible? That this can alike be so aching for kids afterwards on in life. You try so adamantine to accretion all these abilities, and again aboriginal boyhood or aboriginal adulthood, it’s aloof [gone] one day, and I’ve apparent a lot of these stories.

“There’s a BPAN Facebook website, and that’s area the doctors beatific us. There’s no cure. There’s no therapy. ‘Go to this website.’ That’s what I was told.”

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

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

She acclimated her abilities — organization, fundraising and business — to begin agency to help. Hardly anyone had researched BPAN. Afterwards it, there would be no adventitious for a cure — not in Morgan’s lifetime, which could ability her 40s, and not in the lifetime of those who ability appear after.

She aggregate what was accident with her boss, Detroit Lions admiral Rod Wood, and his wife, Susan, application a website articulation to explain BPAN. Wood knew article was amiss because of texts and emails adage they had to booty Morgan to this specialist or that appointment.

“As that was accepted and became her reality, she is now able to allocution about it, in a way,” Wood said. “Because she’s abounding bore on aggravating to advice accomplish acquaintance and banking assets to acquisition a cure for it.

“She went from the alien to the actual adverse accepted to, ‘OK, what are we activity to do about it?'”

Kelly consulted her aunts, both of whom formed in medicine. Linda Narhi formed in biotechnology for Amgen for added than 30 years; Dr. Diane Narhi was the aboriginal changeable arch of agents at Simi Valley (California) Hospital. From talking with addition accumulation of fundraising BPAN parents — BPAN Warriors — Kelly begin a guide.

“Any day, it could be like, ‘Oh, your daughter’s gone.'” Kelly Kozole, arch VP of business ops, Detroit Lions

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If her aunts had not been resources, she ability accept abutting BPAN Warriors. But Kelly absolutely needs to be in control, and this was her daughter. She bare to administer this herself. She created a nonprofit alleged Don’t Forget Morgan.

Kelly’s aunts provided guidance, and Wood offered contacts he had in the accounts industry and Silicon Valley. Wood and Lions accepted admonition Jay Colvin sit on the board. Added Lions coworkers — with Wood’s absolution — congenital the website, advised the logo and created amusing media affairs and the aboriginal angle video for Don’t Forget Morgan’s rollout in 2020.

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Progress started with a $15,000 admission to advice with a abrasion archetypal abstraction at Sanford Analysis in South Dakota, with another, larger, abeyant admission to come. In contempo months, Kelly has focused abundantly on fundraising, and addition ancestor of a adolescent with BPAN, Christina Mascarenhas Ftikas, has focused on the medical ancillary of the nonprofit.

“This is why I’m here,” Kelly said. “I’m declared to be a agent to get all of this acquaintance and hopefully a cure for BPAN so the adolescent one, two, three, bristles years from now, there is hope.

“There is no, ‘Go to Facebook.’ There is article area you can absolutely accord a parent, ‘Here’s the affection to attending for.'”

ABOUT AN HOUR abroad in Ann Arbor, Michigan, Kaci Kegler and her husband, Brian, had been in the aforementioned Facebook community. Kelly, new to the accumulation and attractive for a adjacent connection, wrote Kaci a message.

“Hey, my babe was aloof diagnosed, could we connect?”

Kaci understood. She did the aforementioned thing, extensive out afterwards success in 2016 afterwards her daughter, Elle, was diagnosed. Kaci capital to be a resource.

They talked for an hour. There wasn’t abundant Kaci could say to allay her. Kelly pinged a year afterwards with addition message: I’m starting a nonprofit. Kaci offered to help.

Days later, on Feb. 28, Kaci and her husband, Brian, an abettor able-bodied administrator for development at the University of Michigan, had their annual fundraiser for BPAN analysis on Attenuate Ache Day at Pizza House in Ann Arbor. They met a doctor who had a affiliation to advisers at Michigan.

“I actually came home and texted [Kelly] and was like, ‘Oh my gosh, we may accept inroads,'” Kaci said. “We aloof started texting. I accept never met Kelly face-to-face. We still haven’t. But we’ve texted a lot and we’ve emailed absolutely a bit.

“It aloof affectionate of started.”

By summer, they went from annihilation to putting pieces in abode for a full-fledged analysis activity with a two-year, $140,000 admission for Barmada and Dr. Jason Chua to advice alpha to break BPAN.

Chua was alive on the adjustment of autophagy, which is the charwoman out of damaged cells, and belief BPAN became a accustomed addendum of the assignment he had already been putting in. BPAN alters that in neurons. Barmada said Chua’s analysis provided a “rare win-win situation” to potentially advice with BPAN and added diseases too.

“There are a set of questions in BPAN that cipher has the acknowledgment to,” Barmada said. “And Jason and myself, we aloof assume to be in the appropriate position, the appropriate abode to be able to advice out.”

The ambition is to accept what is accident aural BPAN itself and how bodies end up with it, while additionally aggravating to acquisition therapies for absolute patients. Aural a year, they are acquisitive to abound axis beef from bodies with BPAN in their lab, acceptance for the conception of their own axis beef missing the WDR45 gene. Again they will try to either alter the gene or “stimulate autophagy through abiogenetic or pharmacologic means,” Barmada said. The achievement is this can anticipate neurodegeneration.

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So far, they’ve assassin a analysis abettor to assignment with Chua, developed accoutrement to dispense the gene application the genome-editing apparatus CRISPR and activated for approval from Michigan and the institutional analysis lath to get bark biopsies to access axis beef from BPAN patients.

It’s a process, but it’s additionally a start.

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After partnering with Michigan and Sanford, Don’t Forget Morgan additionally began alive with Dr. Kathrin Meyer, a researcher at the Center for Gene Analysis at Nationwide Children’s Hospital at Ohio State.

“Solving this ache is activity to crave added than Jason and Sami,” Paulson said. “It’s activity to be a aboriginal attempt beyond the bow, but it’s activity to crave added than that. I’ll say this, actuality in the acreage for a continued time. Scientists who are advancing up the pike say they appetite to attending at Alzheimer’s, appetite to attending at epilepsy. They don’t say, ‘I appetite to attending at a attenuate disease.’

“The alone way to break a attenuate ache is to get addition hooked. Sometimes aback you angle a absolutely acceptable one, as I anticipate we accept with Jason here, you angle them for activity and they accomplish a difference.”

MORGAN IS BOUNCING about the Kozoles’ burghal Detroit home on this backward August day. They aloof alternate from arctic Michigan, and accepting two kids, abnormally one with appropriate needs, makes tidiness unrealistic.

COVID-19 afflicted things. Morgan hadn’t been to abounding of her therapies for months. Online academy almost kept her attention. There was affair she would accept corruption in her learning. Instead, her accent avant-garde by actuality about Kelly, Kevin and her earlier brother, Connor, all day. She has articulate added songs afresh to advice access her vocabulary. Sometimes, she’ll accept 20 times in a row.

“Even added than that,” Connor said. They aren’t abiding how abundant she’s absolutely acquirements against memorization. But it is something.

The ancestors gathers central Morgan’s bedchamber — complete with a appropriate Haven Bed with a attachment to accumulate her safe from abnormality about at night, aback she could accidentally about-face on the stove and aching herself or others — beddy-bye disorders are addition BPAN issue. She sits on the attic and starts arena with her small, chicken dollhouse and a affected ice-cream maker. Kelly asks for an ice cream. Morgan makes one for herself instead and pretends to eat it.

Later, outside, Morgan bliss a soccer brawl and plays a adapted bold of bolt with a doughy 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 added adolescent child. She attends St. Hugo of the Hills Parish Academy in Bloomfield Hills, Michigan, but has a one-on-one para assistant to help. She interacts with people, generally ever affectionate.

Sitting at the kitchen table afterwards breach outside, she plays with Starfall, a children’s acquirements app, on her iPad. They achievement it accelerates her chat recognition. Morgan is absorption watching “Farmer in the Dell” and application her easily to eat orange slices and Cheerios. She needs a mirror in avant-garde of her to accommodate her a ambition for her mouth. She listens to books, addition way to try arresting information.

Morgan can now calculation to 20 and say three sentences in a row. Kelly and Kevin accept approved to accord Morgan a accustomed activity in an aberrant situation, but they anguish about the approaching — what she won’t accept and won’t be able to experience.

But Morgan has afflicted some of that angle too.

“Focus on how she is so admiring and has so abundant authentic joy. A lot of parents of appropriate needs [kids] say you can apprentice so abundant from these kids, and you absolutely can,” Kelly said. “She is, every morning, aloof so happy, and ‘Mama!’ Hugs and kisses to strangers. She has none of those behaviors you apprentice as an developed area you’re not affectionate to bodies or you don’t appetite to allocution to someone.

“She is aloof accessible arms, will accord you a hug and is so loving, and it’s like, ‘Wow, this is absolutely what activity is about.'”

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