When Karen Bowersox couldn’t find clothes to fit her granddaughter, she decided to make them herself – and her newcompany, Down’s Designs, was born.
But a few years ago, if you'd asked the entrepreneur if she wanted to set up a new business, she'd have laughed at you. She was 61, running her husband's medical practice and a weight-loss coaching program, and had an ever-expanding number of grandkids and an 86-year-old mother to care for – but then everything changed.
“My daughter had given birth to twins about nine years ago, and they were very premature. The little girl weighed three pounds, and she was just perfectly healthy, and didn't even need oxygen. But the little boy, Brendan, he had Down syndrome – his lungs could not sustain his life, and he lived about eight and a half months. I was shattered.
“Two years later, they adopted this little girl with Down syndrome. At that point, I came out of my depression and my life turned around.”
After running a successful housekeeping business for years, Ms. Bowersox helped her husband start a private practice in 2001 – but she has stepped back from the practice to start her new business.
The new venture combines her love for her granddaughter, Maggie, her business sense, and her willingness to throw herself headfirst into pretty much anything. The seeds of this venture began when she attended the annual Buddy Walk in Cleveland, Ohio, a national event that raises money for Down syndrome organizations.
There, she was struck by a common sight – people with Down syndrome in oversized clothes rolled up to fit. The nature of the condition means that the body develops differently, and finding suitable clothing is next to impossible.
“One day, my daughter looked at me, rolling up Maggie's pants, and said ‘You know, Mom, you’re a business woman. You want a really good business, why don't you make clothes for these people?’
“At that time, I was 61 years old. I didn't know a thing about clothes. I went home and said ‘I'll just buy her something online.’”
But after extensive searching, she still couldn’t find any solutions – and decided to tackle the problem herself.
Misconceptions about people with Down syndrome have diminished in recent decades, but there is still a startling lack of knowledge about the physicality of those with the condition. What started as a noble idea became a much more difficult task once Ms. Bowersox realized the enormity of what she was proposing – a new clothing line for a group of people who have entirely different body types.
“Their thigh bone is much shorter. Everything bends at the wrong places. Their shoulders slant down, and they have big thick necks and usually big tummies. But the entrepreneur in my head would not quit,” she recalls.
With no background in design, she found it almost impossible to negotiate with international suppliers, until Chinese factory manager Andy Yen got in touch to form a relationship. Similarly, the inevitable trial-and-error process has been softened by the ongoing involvement of design graduate Jillian Jankovsky. In addition, the market has shown great patience.
“It sometimes brings me to tears, the appreciation of these people that someone is finally trying to do something for these kids. We go to conferences – I don't have much and I'm always apologizing. But you know what, they didn't have clothes all these years, they're just so grateful that they're coming. It's why I do this.”
Surprisingly, Down's Designs is the first business of its type, though the market is significant – about 35,000 people with Down syndrome live in Canada, according to the Canadian Down Syndrome Society. Ms. Bowersox promises that Down's Designs will be “international, it will be worldwide. I will eventually have all clothes for all ages, and if others want to follow: bring 'em on.”
At the moment, Down's Designs is in the final stages of their adult clothing line, and plans for the coming year include locking down their children’s range and ramping up marketing. Because there is an in-built community in organizations worldwide, Ms. Bowersox plans to approach them with the chance to market to their members while also recouping 5% of sales. It will build the community and the business, and will match her ethos of always giving back.
A perfect fit for those with Down syndrome
Special to Globe and Mail Update
The main thing, though, is that it makes people with Down syndrome feel accepted.
“Years ago, people with Down syndrome were stuck in institutions. But now my granddaughter goes to publicschool. These kids are mainstream; they're brought out of this. They're developing, they're functioning; they have jobs, they have girlfriends and boyfriends; they kiss, they go dancing, they go to proms.”
With an attitude like that, it's easy to imagine that a few years from now, Maggie will be thanking her grandmother for all the work she's done – and for designing a prom dress that's a perfect fit.
This is a list of some of the basic information about Down Syndrome. So much fiction out there, much better to have the facts.
• Down syndrome occurs when some or all of a person’s cells have an extra full or partial copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
• Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies is born with Down syndrome.
• There are more than 400,000 people living with Down syndrome in the United States.
• Down syndrome occurs in people of all races and economic levels.
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
• Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
Tucked away behind the white walls of an orphanage in the eastern Ukrainian city of Donetsk, Kareen had no inkling of the life that awaited her.
At 4 years old, her fate was seemingly sealed. Within a matter of months, Kareen was scheduled to be transferred to an adult mental institution, where she would live out her life with no hope for a family or an education.
But one picture on the Internet of the little girl with Down syndrome was all it took for a 30-something Utah couple with three daughters at home to fly across the globe to bring her home. They knew virtually nothing about her, except the life of neglect she likely faced if left in her native Ukraine.
"Her eyes were really what spoke to us first," Kecia Cox said of that picture she found on the Internet. "They just grabbed us, and we just knew that she was saying, 'You're my mom and you're my dad, and you're supposed to come get me.'"
Children with Down syndrome in Ukraine are often abandoned at birth, deemed worthless by a struggling society that praises appearances. Institutionalizing these children at 4 or 5 years old alongside adults with severe mental illness is a common and accepted practice.
ABC News gained access to three of Ukraine's mental institutions and documented the very reason Kris and Kecia Cox were so quick to save Kareen. The institutions were sorely underfunded, the children were often filthy and covered in sores and scratches.
They were seen injuring themselves and rocking back and forth in what experts say is likely an attempt to self-soothe. And most of the children with Down syndrome appeared years younger than their actual ages, a kind of emotional dwarfism doctors say happens after extreme neglect.
Administrators and caretakers, one with tears in her eyes, said they want better for the children but can't get the money from the Ukrainian government.
But there is a glimmer of hope for some. A growing number of Americans are clamoring to adopt children with Down syndrome from Ukraine and other eastern European countries and give them lives their biological parents never knew they were capable of having.
'People Just Have to Abandon Children' The fall of the Soviet Union left Ukraine an independent nation grappling with economic instability. Thirty-five percent of the population lives below the poverty level.
Giving birth to a child with Down syndrome – or with any disability – is financially and culturally crippling. It is more common to abandon a child with Down syndrome than to raise it.
Angelina, the Coxes' adoption coordinator in Donetsk who declined to give her last name, described such a birth as a "disaster for families."
"It's sad, but no choice," she said. "People just have to abandon children. It wouldn't survive in this society."
She said that even on the street, the sight of anyone with a physical handicap was rare. In most places, even in the country's capital city of Kiev, there were no wheelchair ramps, and elevators were often not wide enough to accommodate them.
The disabled, she said, are hidden from view.
Children with Down syndrome are considered outcasts, she said, throwaways.
"That's why they place them to closed institutions They have to spend the rest of life being outside of society. Absolutely," Angelina said. "They ... have absolutely no choices, no opportunities in this society."
We had a wonderful family time gift giving. David and I made gifts for family members. It is the first time we had done that. We made a warm blanket personalized for each person. I know I want to do it again next year.
Giving to those who need gives back ten times more. Down Syndrome Community coming together to help family. This is the true Christmas spirit.
Yes, William, there is a Santa Claus
Christmas wishes come true for man with Down syndrome
By Richard Weir
Sunday, December 25, 2011
When a widowed friend died suddenly in March, leaving her 37-year-old son with Down syndrome alone in the world, Robin Lungo became his adoptive mom — a deed that nine months later has renewed her Christmas spirit and provided her a gift she can’t buy at the mall.
Despite living on a meager disability check and battling breast cancer, Lungo, 58, a widow herself and mother of a grown daughter, kept her promise to her late 71-year-old friend Mary and took her son William Marshall Jr. into her small Somerville apartment.
She has dug into her savings to keep up William’s routines, taking him to the movies once a month and to his weekly bowling league, and splurging on the popcorn he loves at both. But Christmas was proving to be a hardship because Lungo knew William cherished the holiday and was used to a bounty of gifts his mom would leave under their tree on Christmas and Little Christmas, an Irish celebration on Jan. 6 marking the Feast of the Epiphany.
He believes in Santa. He can’t wait for him to come. He’s got his list on the refrigerator. After Thanksgiving, he was sitting in the chair, and he says to me, ‘He’s coming. Santa’s coming.’ Every time I say it, I get goose bumps,” she said. “William is used to a big Christmas.”
“Derr Sante Clus,” begins the list that William penciled on loose leaf paper in a 6-year-old’s syntax and proudly showed a reporter, itemizing the things he needs (a new hat, gloves) and wants (Disney DVDs, CDs of oldies music).
“My husband died Thanksgiving 18 years ago. It hasn’t been happy Christmases for me for a while,” said Lungo, who said having William in her life has brightened her holidays. “He will come over and just rub my face and give me a hug and a kiss. He’s very affectionate.”
So she dusted off her artificial tree and, for the first time in years, strung lights and hung decorations to make her home more festive for William. But still she fretted about finding the money to buy him gifts.
A friend, however, wrote a local Down syndrome support group seeking help in buying gifts for the man with the boyish spirit who still believes in St. Nick. The group’s founder, Melanie McLaughlin, whose daughter Gracie, 4, has Down syndrome, was so moved she reached out to her network of moms and collected three bags of donated gifts and $150.
“It’s a beautiful thing that she did. She’s honoring her friend by caring for her son, whom she’s known for a long time and clearly loves. It’s not easy. She’s living paycheck to paycheck,” McLaughlin said.
A grateful Lungo said the presents will make William so happy today and make her smile as she watches him open them.
“The whole spirit of giving and Christmas has come full circle for Robin,” said Lungo’s friend, Jackie Murray, 56. “She’s always been a giver and with William she has received the true joy of Christmas. His gift to her is the gift of love.”
And, explained Lungo, a renewed purpose in life.
“He gives me a reason to be here, too. I’m a three-time cancer survivor. I think that’s why I’m here. To take care of William. It’s kind of my job. I promised I would do it and I’m doing it. Right, William?”
“Yep,” replied William.
Christmas is tomorrow......... Are you ready? Do you celebrate? What does the holiday mean to you?
Wishing you and yours Peace on Earth, a warm bed, enough food on your table, a family to love you, and a smile.
Afrikaans: Geseënde Kersfees Afrikander: Een Plesierige Kerfees African/ Eritrean/ Tigrinja: Rehus-Beal-Ledeats Albanian:Gezur Krislinjden Arabic: Milad Majid Argentine: Feliz Navidad Armenian: Shenoraavor Nor Dari yev Pari Gaghand Azeri: Tezze Iliniz Yahsi Olsun Bahasa Malaysia: Selamat Hari Natal Basque: Zorionak eta Urte Berri On! Bengali: Shuvo Naba Barsha Bohemian: Vesele Vanoce Bosnian: (BOSANSKI) Cestit Bozic i Sretna Nova godina Brazilian: Feliz Natal Breton: Nedeleg laouen na bloavezh mat Bulgarian: Tchestita Koleda; Tchestito Rojdestvo Hristovo Catalan: Bon Nadal i un Bon Any Nou! Chile: Feliz Navidad Chinese: (Cantonese) Gun Tso Sun Tan'Gung Haw Sun Chinese: (Mandarin) Sheng Dan Kuai Le Choctaw: Yukpa, Nitak Hollo Chito Columbia: Feliz Navidad y Próspero Año Nuevo Cornish: Nadelik looan na looan blethen noweth Corsian: Pace e salute Crazanian: Rot Yikji Dol La Roo Cree: Mitho Makosi Kesikansi Croatian: Sretan Bozic Czech: Prejeme Vam Vesele Vanoce a stastny Novy Rok Danish: Glædelig Jul Duri: Christmas-e- Shoma Mobarak Dutch: Vrolijk Kerstfeest en een Gelukkig Nieuwjaar! or Zalig Kerstfeast English: Merry Christmas Eskimo: (inupik) Jutdlime pivdluarit ukiortame pivdluaritlo! Esperanto: Gajan Kristnaskon Estonian: Rõõmsaid Jõulupühi Ethiopian: (Amharic) Melkin Yelidet Beaal Faeroese: Gledhilig jol og eydnurikt nyggjar! Farsi: Cristmas-e-shoma mobarak bashad Finnish: Hyvaa joulua Flemish: Zalig Kerstfeest en Gelukkig nieuw jaar French: Joyeux Noel Frisian: Noflike Krystdagen en in protte Lok en Seine yn it Nije Jier! Galician: Bo Nada Gaelic: Nollaig chridheil agus Bliadhna mhath ùr! German: Fröhliche Weihnachten Greek: Kala Christouyenna! Haiti: (Creole) Jwaye Nowel or to Jesus Edo Bri'cho o Rish D'Shato Brichto Hausa: Barka da Kirsimatikuma Barka da Sabuwar Shekara! Hawaiian: Mele Kalikimaka Hebrew: Mo'adim Lesimkha. Chena tova Hindi: Shub Naya Baras (good New Year not Merry Christmas) Hungarian: Kellemes Karacsonyi unnepeket Icelandic: Gledileg Jol Indonesian: Selamat Hari Natal Iraqi: Idah Saidan Wa Sanah Jadidah Irish: Nollaig Shona Dhuit, or Nodlaig mhaith chugnat Iroquois: Ojenyunyat Sungwiyadeson honungradon nagwutut. Ojenyunyat osrasay. Italian: Buone Feste Natalizie Japanese: Shinnen omedeto. Kurisumasu Omedeto Jiberish: Mithag Crithagsigathmithags Korean: Sung Tan Chuk Ha Lao: souksan van Christmas Latin: Natale hilare et Annum Faustum! Latvian: Prieci'gus Ziemsve'tkus un Laimi'gu Jauno Gadu! Lausitzian:Wjesole hody a strowe nowe leto Lettish: Priecigus Ziemassvetkus Lithuanian: Linksmu Kaledu Low Saxon: Heughliche Winachten un 'n moi Nijaar Luxembourgish: Schèine Chreschtdaag an e gudde Rutsch Macedonian: Sreken Bozhik Maltese: IL-Milied It-tajjeb Manx: Nollick ghennal as blein vie noa Maori: Meri Kirihimete Marathi: Shub Naya Varsh (good New Year not Merry Christmas) Navajo: Merry Keshmish Norwegian: God Jul, or Gledelig Jul Occitan: Pulit nadal e bona annado Papiamento: Bon Pasco Papua New Guinea: Bikpela hamamas blong dispela Krismas na Nupela yia i go long yu Pennsylvania German: En frehlicher Grischtdaag un en hallich Nei Yaahr! Peru: Feliz Navidad y un Venturoso Año Nuevo Philippines: Maligayang Pasko! Polish: Wesolych Swiat Bozego Narodzenia or Boze Narodzenie Portuguese:Feliz Natal Pushto: Christmas Aao Ne-way Kaal Mo Mobarak Sha Rapa-Nui (Easter Island): Mata-Ki-Te-Rangi. Te-Pito-O-Te-Henua Rhetian: Bellas festas da nadal e bun onn Romanche: (sursilvan dialect): Legreivlas fiastas da Nadal e bien niev onn! Rumanian: Sarbatori vesele or Craciun fericit Russian: Pozdrevlyayu s prazdnikom Rozhdestva is Novim Godom Sami: Buorrit Juovllat Samoan: La Maunia Le Kilisimasi Ma Le Tausaga Fou Sardinian: Bonu nadale e prosperu annu nou Scots Gaelic: Nollaig chridheil huibh Serbian: Hristos se rodi. Singhalese: Subha nath thalak Vewa. Subha Aluth Awrudhak Vewa Slovak: Vesele Vianoce. A stastlivy Novy Rok Slovene: Vesele Bozicne Praznike Srecno Novo Leto or Vesel Bozic in srecno Novo leto Spanish: Feliz Navidad Swedish: God Jul and (Och) Ett Gott Nytt År Tagalog: Maligayamg Pasko. Masaganang Bagong Taon Tamil: (Tamizh) Nathar Puthu Varuda Valthukkal (good New Year not Merry Christmas) Trukeese: (Micronesian) Neekiriisimas annim oo iyer seefe feyiyeech! Thai: Sawadee Pee Mai or souksan wan Christmas Turkish: Noeliniz Ve Yeni Yiliniz Kutlu Olsun Ukrainian: Srozhdestvom Kristovym or Z RIZDVOM HRYSTOVYM Urdu: Naya Saal Mubarak Ho (good New Year not Merry Christmas) Vietnamese: Chuc Mung Giang Sinh Welsh: Nadolig Llawen Yoruba: E ku odun, e ku iye'dun!