題材: http://tw.news.yahoo.com/article/url/d/a/100404/5/23a6l.html
網路調查顯示，只有10%的上班族完成兒時夢想
Only 10 percent of OL people do occupations that they dreamed in childhood.
Q1: 大家小時候的夢想是什麼呢? 是否實現了呢?
What did you what to be in the future as you were in childhood?
Have you made dreams come true?
Q2: 支持你實現夢想的最大力量是什麼？阻礙你實現夢想的原因是什麼?
What’s the main resource that supported you achieving your dreams?
What’s the biggest wall that stopped you achieving your dreams?
Q3: 未來想要變成什麼樣的人? 想要過什麼樣的生活? 如何去實現呢?
Imagine the one you want to be and the life you want to live, how do you achieve?
裡頭有什麼樣的人？ Who is involved?
柏安潔(Angela Utschig)是本中心的創辦人,同時也是「思，生活工作室」各項活動的協調人。
柏安潔是一名油畫家,也是一名配音員。她的主修是建築,因此從事過與建築及室內設計相關的工作。她透過瀏覽網站、與人交談的方式，投注大量時間研究社會、文化、政府、商業、倫理與靈修等議題。過去,她曾在世界公民文化中心台北及新竹校區帶領一群關心社會的人進行各項議題的討論。
Angela Utschig (柏安潔) is the founder and program coordinator of The Studio for Rethinking Ourselves.
Angela is an oil painter and a voice recording artist. She majored in and has practiced architecture and interior design. She spends a considerable amount of time studying the social, cultural, governmental, business, ethical and spiritual practices of our time through reading and talking to people around the world both in person and on the internet. In the past, she has run a discussion class called Culture Class, held at Core-Corner in Taipei and Hsinchu.
Fanny Lin 負責安排中文討論會。
Fanny是一名金融研究工作者。主修財務金融，卻對數字不甚感興趣，反而喜歡觀察探究人類的思想和行為，以及人類社會的組織構成和歷史文化。因此，她選擇從事金融研究，包括：人類社會的經濟行為、金融發展歷史、金融制度與政策等。除此之外，Fanny也廣泛地關注各類議題，藉由閱讀書報、觀賞電視電影等方式，反覆思考人類的生活及社會的運作。過去曾參與世界公民文化中心台北的討論課程。
Fanny Lin coordinates the 中文討論會 Chinese Discussion meeting.
Fanny is a financial researcher. She majored in finance and banking. Rather than in numbers, she is interested in human beings’ thinking and behavior, as well as the organization, history and culture of society. As a result, she chooses to work on financial research, including human beings’ behavior in economic societies, histories about financial development, and financial regulation. Fanny also pays attention to a wide ranges of issues. She rethinks types of daily life and models of society through books and movies. In the past, she has attended the Culture Class held by Angela at Core-Corner in Taipei.
Quan Yu 負責安排不分級私影評
Quan Yu 是個自由接案者。寫稿、影視企劃兼任製片助理，有關電影拍攝的大小事都參與過。對電影與劇本有著濃厚的熱情與興趣。「影像反映著人類的情感與真實生活的片段」，宛如一面照射鏡，Quan相信透由彼此對劇本與影片的解讀，能更靠近自己的內在，呈現自己真實的相貌。
Quan Yu coordinates and hosts 不分級私影評 Movie Night on the last Friday of the month.
Quan Yu is a freelancer for writing and film and television production. As a production planning assistant she takes care of everything involved, no matter how large or small. She has a strong passion and interest for film and scripts. The images mirror human emotion and fragments of real life, reflected in light. Quan believes that through the mutual interpretation of the script and the film we can be closer to our inner self, showing our true appearance.
Stacy Yang是網站中文編輯，是此部落格固定撰稿人。
Stacy Yang是一名小學教師兼行政人員。她對孩子如何成長、如何變成大人，以及孩子與父母親的關係、家庭與社會期望之間的動態平衡、個人對於選擇自己的道路的需求等議題相當感興趣。
Stacy Yang is the site's chinese editor and is a regular contributor to the blog.
Stacy Yang is an administrator and teacher at an elementary school. She is very interested in how children grow up and become adults, and the relationships between children and their parents, and the interconnected dynamics between family and social expectations and the individual's need to choose their own path.
柏安潔是一名油畫家,也是一名配音員。她的主修是建築,因此從事過與建築及室內設計相關的工作。她透過瀏覽網站、與人交談的方式，投注大量時間研究社會、文化、政府、商業、倫理與靈修等議題。過去,她曾在世界公民文化中心台北及新竹校區帶領一群關心社會的人進行各項議題的討論。
Angela Utschig (柏安潔) is the founder and program coordinator of The Studio for Rethinking Ourselves.
Angela is an oil painter and a voice recording artist. She majored in and has practiced architecture and interior design. She spends a considerable amount of time studying the social, cultural, governmental, business, ethical and spiritual practices of our time through reading and talking to people around the world both in person and on the internet. In the past, she has run a discussion class called Culture Class, held at Core-Corner in Taipei and Hsinchu.
Fanny Lin 負責安排中文討論會。
Fanny是一名金融研究工作者。主修財務金融，卻對數字不甚感興趣，反而喜歡觀察探究人類的思想和行為，以及人類社會的組織構成和歷史文化。因此，她選擇從事金融研究，包括：人類社會的經濟行為、金融發展歷史、金融制度與政策等。除此之外，Fanny也廣泛地關注各類議題，藉由閱讀書報、觀賞電視電影等方式，反覆思考人類的生活及社會的運作。過去曾參與世界公民文化中心台北的討論課程。
Fanny Lin coordinates the 中文討論會 Chinese Discussion meeting.
Fanny is a financial researcher. She majored in finance and banking. Rather than in numbers, she is interested in human beings’ thinking and behavior, as well as the organization, history and culture of society. As a result, she chooses to work on financial research, including human beings’ behavior in economic societies, histories about financial development, and financial regulation. Fanny also pays attention to a wide ranges of issues. She rethinks types of daily life and models of society through books and movies. In the past, she has attended the Culture Class held by Angela at Core-Corner in Taipei.
Quan Yu 負責安排不分級私影評
Quan Yu 是個自由接案者。寫稿、影視企劃兼任製片助理，有關電影拍攝的大小事都參與過。對電影與劇本有著濃厚的熱情與興趣。「影像反映著人類的情感與真實生活的片段」，宛如一面照射鏡，Quan相信透由彼此對劇本與影片的解讀，能更靠近自己的內在，呈現自己真實的相貌。
Quan Yu coordinates and hosts 不分級私影評 Movie Night on the last Friday of the month.
Quan Yu is a freelancer for writing and film and television production. As a production planning assistant she takes care of everything involved, no matter how large or small. She has a strong passion and interest for film and scripts. The images mirror human emotion and fragments of real life, reflected in light. Quan believes that through the mutual interpretation of the script and the film we can be closer to our inner self, showing our true appearance.
Stacy Yang是網站中文編輯，是此部落格固定撰稿人。
Stacy Yang是一名小學教師兼行政人員。她對孩子如何成長、如何變成大人，以及孩子與父母親的關係、家庭與社會期望之間的動態平衡、個人對於選擇自己的道路的需求等議題相當感興趣。
Stacy Yang is the site's chinese editor and is a regular contributor to the blog.
Stacy Yang is an administrator and teacher at an elementary school. She is very interested in how children grow up and become adults, and the relationships between children and their parents, and the interconnected dynamics between family and social expectations and the individual's need to choose their own path.
丈夫眼中的老婆
日劇「人妻的遊戲」中，那些丈夫不是把妻子當成裝飾品(decoration)，就是家事及性事機器人(robots for housekeeping and sex)。我感到很生氣。
而且，老婆把錢花去哪裡，花了多少錢，都必須跟丈夫報告。甚至，老婆跟誰見面，都必須經過丈夫同意。我感到很生氣。
若不是這些老婆被要求放棄工作，在家幫男人打掃洗衣，省去男人的麻煩，這些男人有辦法專心工作、分心花天酒地、分心養小老婆嗎? !! 我很生氣。
而這些男人要求老婆放棄工作、在家當黃臉婆，自己就覺得在外面賺錢是很了不起的事情，嫌棄老婆沒知識，罵老婆是笨蛋，卻沒有想過：他們的老婆是為了誰而犧牲？這些老婆在結婚前，哪一個不是知識份子？
我對家庭裡，丈夫、爸爸，這種覺得「自己最辛苦」、「只有自己為了家而付出」的「自以為是」(self-righteous)的想法，很生氣。
而且，老婆把錢花去哪裡，花了多少錢，都必須跟丈夫報告。甚至，老婆跟誰見面，都必須經過丈夫同意。我感到很生氣。
若不是這些老婆被要求放棄工作，在家幫男人打掃洗衣，省去男人的麻煩，這些男人有辦法專心工作、分心花天酒地、分心養小老婆嗎? !! 我很生氣。
而這些男人要求老婆放棄工作、在家當黃臉婆，自己就覺得在外面賺錢是很了不起的事情，嫌棄老婆沒知識，罵老婆是笨蛋，卻沒有想過：他們的老婆是為了誰而犧牲？這些老婆在結婚前，哪一個不是知識份子？
我對家庭裡，丈夫、爸爸，這種覺得「自己最辛苦」、「只有自己為了家而付出」的「自以為是」(self-righteous)的想法，很生氣。
Typhoon Morakot / Pictures
The typoon Morakot has just posed massive damage on Taiwan.
Here's some pictures breaking my heart:
http://www.boston.com/bigpicture/2009/08/typhoon_morakot.html
I felt sorry and sad when I saw these pictures.
Only were we involved in the impaired area,
we could imagine how cruel the natural will be.
Here's some pictures breaking my heart:
http://www.boston.com/bigpicture/2009/08/typhoon_morakot.html
I felt sorry and sad when I saw these pictures.
Only were we involved in the impaired area,
we could imagine how cruel the natural will be.
Article For 5/23 -- The Price Is Not Right
The W-a club will be held on Saturday May 23, at 7 pm, at Imbiss. Fanny is the moderator.
Imbiss
Address: Xinhai Road, Sec 1, Alley 34, No. 3
Tel: 02-2362 0611
Article:
The Price Is Not Right, by Thomas Friedman, NY Time, March 31, 2009
(The article connects environment issues to financial crisis issues.)
Think About It:
In addition to toxic assets in banks and those pollutants damaging our environments, what else in our life or societies are mispriced? What can we do to make these be correctly priced?
You May Be Interested In:
http://www.nytimes.com/2009/04/12/opinion/12friedman.html
(A story shows how the Costa Rica has strike a balance between economy growth and environment preservation.)
More About Sup-prime Crisis And Those Banks:
http://www.ft.com/indepth/subprime
Article
I don’t expect much from the G-20 meeting this week, but if I had my wish, the leaders of the world’s 20 top economies would commit themselves to a new standard of accounting — call it “Market to Mother Nature” accounting. Why? Because it’s now obvious that the reason we’re experiencing a simultaneous meltdown in the financial system and the climate system is because we have been mispricing risk in both arenas — producing a huge excess of both toxic assets and toxic air that now threatens the stability of the whole planet.
Just as A.I.G. sold insurance derivatives at prices that did not reflect the real costs and the real risks of massive defaults (for which we the taxpayers ended up paying the difference), oil companies, coal companies and electric utilities today are selling energy products at prices that do not reflect the real costs to the environment and real risks of disruptive climate change (so future taxpayers will end up paying the difference).
Whenever products are mispriced and do not reflect the real costs and risks associated with their usage, people go to excess. And that is exactly what happened in the financial marketplace and in the energy/environmental marketplace during the credit bubble.
Our biggest financial-services companies, some of which came to be seen as too big to fail, engaged in complex financial trading schemes that did not adequately price in the costs and risks of a market reversal. A.I.G., for instance, was selling insurance for all kinds of financial instruments and did not have anywhere near adequate reserves to cover claims if things went badly wrong, as they did. And our biggest energy companies, utilities and auto companies became dependent on cheap hydrocarbons that spin off climate-changing greenhouse gases, and we clearly have not forced them, through a carbon tax, to price in the true risks and costs to society from these climate-changing fuels.
“When the balance sheet of a company does not capture the true costs and risks of its business activities,” and when that company is too big to fail, “you end up with them privatizing their gains and socializing their losses,” Nandan Nilekani, the co-chairman of the Indian technology company Infosys, remarked to me. That is, everyone gets to rack up their private profits today and pay them out in current bonuses and dividends. But any catastrophic losses — if the company is too big to fail — “get socialized and paid off by taxpayers.”
This is why we need new banking regulation that reins in the leverage and speculative trading that big banks and insurance companies can undertake so they never again become simultaneously too reckless to regulate but too big fail and taxpayers are forced to pay off the toxic assets they accumulate. And this is also why we need a tax on carbon — so we and our power utilities don’t become permanently addicted to cheap coal that makes for lower electricity prices today but spits out toxic greenhouse gases that have to be paid for by future generations tomorrow.
That’s what “Market to Mother Nature” accounting is all about. It begins with the premise that the distinction between the G-20 and the Copenhagen climate change negotiations is totally artificial. They are just flip sides of the same global problem — how we as a world keep raising standards of living for more and more people in ways that will not, as a byproduct, have both the Market and Mother Nature producing huge amounts of toxic assets.
The old system, which has reached its financial and environmental limits, worked like this: We built more and more stores in America to sell more and more stuff, which was made in more and more Chinese factories powered by more and more coal that earned more and more dollars to buy more and more U.S. T-bills that got recycled back to America in the form of cheap credit to build more and more stores and more and more houses that gave rise to more and more Chinese factories.
This system was a powerful engine of wealth creation and lifted millions out of poverty, but it relied upon the risks to the Market and to Mother Nature being underpriced and to profits being privatized in good times and losses socialized in bad times. This capitalist engine doesn’t need to be discarded; it needs some fixes. For starters, we need to get back to basics — accountable lending, prudent saving, reasonable leverage and, most important, more engineering of goods than just financial products.
Some of our biggest financial firms got away from their original purpose — to fund innovation and to finance the process of “creative destruction,” whereby new technologies that improve people’s lives replace old ones, said the Columbia University economist Jagdish Bhagwati, in an interview in The American Interest. Instead, he added, too many banks got involved in exotic and incomprehensible financial innovations — to simply make money out of money — which ended up as “destructive creation.”
“Destructive creation” has wounded both the Market and Mother Nature. Smart regulation and carbon taxation can heal both.
Imbiss
Address: Xinhai Road, Sec 1, Alley 34, No. 3
Tel: 02-2362 0611
Article:
The Price Is Not Right, by Thomas Friedman, NY Time, March 31, 2009
(The article connects environment issues to financial crisis issues.)
Think About It:
In addition to toxic assets in banks and those pollutants damaging our environments, what else in our life or societies are mispriced? What can we do to make these be correctly priced?
You May Be Interested In:
http://www.nytimes.com/2009/04/12/opinion/12friedman.html
(A story shows how the Costa Rica has strike a balance between economy growth and environment preservation.)
More About Sup-prime Crisis And Those Banks:
http://www.ft.com/indepth/subprime
Article
I don’t expect much from the G-20 meeting this week, but if I had my wish, the leaders of the world’s 20 top economies would commit themselves to a new standard of accounting — call it “Market to Mother Nature” accounting. Why? Because it’s now obvious that the reason we’re experiencing a simultaneous meltdown in the financial system and the climate system is because we have been mispricing risk in both arenas — producing a huge excess of both toxic assets and toxic air that now threatens the stability of the whole planet.
Just as A.I.G. sold insurance derivatives at prices that did not reflect the real costs and the real risks of massive defaults (for which we the taxpayers ended up paying the difference), oil companies, coal companies and electric utilities today are selling energy products at prices that do not reflect the real costs to the environment and real risks of disruptive climate change (so future taxpayers will end up paying the difference).
Whenever products are mispriced and do not reflect the real costs and risks associated with their usage, people go to excess. And that is exactly what happened in the financial marketplace and in the energy/environmental marketplace during the credit bubble.
Our biggest financial-services companies, some of which came to be seen as too big to fail, engaged in complex financial trading schemes that did not adequately price in the costs and risks of a market reversal. A.I.G., for instance, was selling insurance for all kinds of financial instruments and did not have anywhere near adequate reserves to cover claims if things went badly wrong, as they did. And our biggest energy companies, utilities and auto companies became dependent on cheap hydrocarbons that spin off climate-changing greenhouse gases, and we clearly have not forced them, through a carbon tax, to price in the true risks and costs to society from these climate-changing fuels.
“When the balance sheet of a company does not capture the true costs and risks of its business activities,” and when that company is too big to fail, “you end up with them privatizing their gains and socializing their losses,” Nandan Nilekani, the co-chairman of the Indian technology company Infosys, remarked to me. That is, everyone gets to rack up their private profits today and pay them out in current bonuses and dividends. But any catastrophic losses — if the company is too big to fail — “get socialized and paid off by taxpayers.”
This is why we need new banking regulation that reins in the leverage and speculative trading that big banks and insurance companies can undertake so they never again become simultaneously too reckless to regulate but too big fail and taxpayers are forced to pay off the toxic assets they accumulate. And this is also why we need a tax on carbon — so we and our power utilities don’t become permanently addicted to cheap coal that makes for lower electricity prices today but spits out toxic greenhouse gases that have to be paid for by future generations tomorrow.
That’s what “Market to Mother Nature” accounting is all about. It begins with the premise that the distinction between the G-20 and the Copenhagen climate change negotiations is totally artificial. They are just flip sides of the same global problem — how we as a world keep raising standards of living for more and more people in ways that will not, as a byproduct, have both the Market and Mother Nature producing huge amounts of toxic assets.
The old system, which has reached its financial and environmental limits, worked like this: We built more and more stores in America to sell more and more stuff, which was made in more and more Chinese factories powered by more and more coal that earned more and more dollars to buy more and more U.S. T-bills that got recycled back to America in the form of cheap credit to build more and more stores and more and more houses that gave rise to more and more Chinese factories.
This system was a powerful engine of wealth creation and lifted millions out of poverty, but it relied upon the risks to the Market and to Mother Nature being underpriced and to profits being privatized in good times and losses socialized in bad times. This capitalist engine doesn’t need to be discarded; it needs some fixes. For starters, we need to get back to basics — accountable lending, prudent saving, reasonable leverage and, most important, more engineering of goods than just financial products.
Some of our biggest financial firms got away from their original purpose — to fund innovation and to finance the process of “creative destruction,” whereby new technologies that improve people’s lives replace old ones, said the Columbia University economist Jagdish Bhagwati, in an interview in The American Interest. Instead, he added, too many banks got involved in exotic and incomprehensible financial innovations — to simply make money out of money — which ended up as “destructive creation.”
“Destructive creation” has wounded both the Market and Mother Nature. Smart regulation and carbon taxation can heal both.
Article for 4/12 : A daughter's disease, a mother's hope
Article 4/12 will be discussed on Sunday April 12, at 3pm, at Goethe Cafe. Maggie is the moderator.
Goethe Cafe
Address: Roosevelt Road, Sec 3, Lane 283, No. 11
Tel: 02 2362 0060
Subway exit: Taipower Building Station exit 2
Article:
North Side mom searches for answers to the puzzle of her daughter's rare disorder
By Deborah L. Shelton Tribune reporter March 25, 2009
In her former job as a school bus attendant, LaSonya Thomas helped care for other people's disabled children. Now her life is consumed by the around-the-clock needs of her own severely ill daughter.
Thomas became a full-time caregiver last year for Maureeka Wilson, 15, when she was diagnosed with a rare disorder. Maureeka can no longer talk, walk, swallow or use the bathroom on her own.
Thomas escorts the 71-pound teenager to countless medical appointments. At home, she handles her daughter's tube feedings, administers medications every three hours and even tucks Maureeka into bed with her most nights, fearful the frail teen will choke to death without quick intervention.
All this leaves Thomas, a single mother living in a public housing development on Chicago's North Side, often feeling utterly alone in a search for treatment, despite being in a sprawling metropolis full of medical providers and top specialists.
That's because of the rareness of the disease with which Maureeka has been tentatively diagnosed—sepiapterin reductase deficiency, a pediatric neurotransmitter problem. Fewer than two dozen cases have been identified worldwide, and most diagnoses have been made around the Mediterranean region, said Dr. Jennifer Friedman, a neurologist at Rady Children's Hospital in San Diego who is considered an expert on pediatric neurotransmitter diseases.
The deficiency is one of an estimated 6,000 rare diseases that afflict about 25 million to 30 million Americans. Each is considered an orphan disease because so few people have it and little or no research is being done. A disease is considered rare if it affects fewer than 200,000 people in the U.S.
"I pray a lot," said Thomas, who talks regularly to a silent, largely unresponsive Maureeka. "I ask God to direct me, give me strength, help me to take it one day at a time."
Seeking answers to the puzzle of her daughter's disorder, Thomas has been searching for other families dealing with the deficiency. So far, she has located only one, in New Mexico. She has called organizations around the country looking for help.
It appears Maureeka has no idea of her mother's devotion. She stares blankly at the world with wide, dark eyes. Her disease has robbed her of an awareness of what goes on around her. On a recent day, she sat stiffly in a wheelchair across from a TV screen filled with static."
It's hard, it's real hard," said Thomas, sitting on a sofa in her sparsely furnished living room, her eyes fixed on her only daughter. "But I love my daughter, and it's not her fault."
Maureeka never walked or talked normally as a youngster, but she attended school and lived a relatively normal life. She was misdiagnosed with cerebral palsy when she was 1. When she was 13, she started having seizures and her condition suddenly worsened, prompting her doctors to rethink their diagnosis.
A special test was done on her spinal fluid to measure levels of neurotransmitters. Doctors determined that she had been born with a genetic defect that affected her body's ability to make neurotransmitters such as dopamine and serotonin. Neurotransmitters are chemicals that relay signals between neurons in the brain.
"We don't have the ability to reverse the genetic problem or to do gene therapy," said Dr. Sarah Elizabeth Zauber, Maureeka's physician and a neurologist at Rush University Medical Center who specializes in movement disorders. "Perhaps down the road as we learn about these diseases, that might be possible."
For now, those diagnosed with the disorder are treated with medication to try to restore their levels of neurotransmitters.But for Maureeka, the medication appears to have triggered periodic body movements that resemble seizures.
Unlike many parents who have sick children with more common and better understood disorders, Thomas has no idea what the future might hold. That adds to the stress.
"Nobody can give her the answer if [her daughter] is going to get better, get worse or stay like this," Zauber said. "Hopefully, with more testing we will know more."For now, Thomas would like to set up a support group and spur research.
"I do understand and accept that there is no cure for Maureeka's disease," Thomas said in her calm, quiet voice. "But I would like to find something that will make her life better."
Goethe Cafe
Address: Roosevelt Road, Sec 3, Lane 283, No. 11
Tel: 02 2362 0060
Subway exit: Taipower Building Station exit 2
Article:
North Side mom searches for answers to the puzzle of her daughter's rare disorder
By Deborah L. Shelton Tribune reporter March 25, 2009
In her former job as a school bus attendant, LaSonya Thomas helped care for other people's disabled children. Now her life is consumed by the around-the-clock needs of her own severely ill daughter.
Thomas became a full-time caregiver last year for Maureeka Wilson, 15, when she was diagnosed with a rare disorder. Maureeka can no longer talk, walk, swallow or use the bathroom on her own.
Thomas escorts the 71-pound teenager to countless medical appointments. At home, she handles her daughter's tube feedings, administers medications every three hours and even tucks Maureeka into bed with her most nights, fearful the frail teen will choke to death without quick intervention.
All this leaves Thomas, a single mother living in a public housing development on Chicago's North Side, often feeling utterly alone in a search for treatment, despite being in a sprawling metropolis full of medical providers and top specialists.
That's because of the rareness of the disease with which Maureeka has been tentatively diagnosed—sepiapterin reductase deficiency, a pediatric neurotransmitter problem. Fewer than two dozen cases have been identified worldwide, and most diagnoses have been made around the Mediterranean region, said Dr. Jennifer Friedman, a neurologist at Rady Children's Hospital in San Diego who is considered an expert on pediatric neurotransmitter diseases.
The deficiency is one of an estimated 6,000 rare diseases that afflict about 25 million to 30 million Americans. Each is considered an orphan disease because so few people have it and little or no research is being done. A disease is considered rare if it affects fewer than 200,000 people in the U.S.
"I pray a lot," said Thomas, who talks regularly to a silent, largely unresponsive Maureeka. "I ask God to direct me, give me strength, help me to take it one day at a time."
Seeking answers to the puzzle of her daughter's disorder, Thomas has been searching for other families dealing with the deficiency. So far, she has located only one, in New Mexico. She has called organizations around the country looking for help.
It appears Maureeka has no idea of her mother's devotion. She stares blankly at the world with wide, dark eyes. Her disease has robbed her of an awareness of what goes on around her. On a recent day, she sat stiffly in a wheelchair across from a TV screen filled with static."
It's hard, it's real hard," said Thomas, sitting on a sofa in her sparsely furnished living room, her eyes fixed on her only daughter. "But I love my daughter, and it's not her fault."
Maureeka never walked or talked normally as a youngster, but she attended school and lived a relatively normal life. She was misdiagnosed with cerebral palsy when she was 1. When she was 13, she started having seizures and her condition suddenly worsened, prompting her doctors to rethink their diagnosis.
A special test was done on her spinal fluid to measure levels of neurotransmitters. Doctors determined that she had been born with a genetic defect that affected her body's ability to make neurotransmitters such as dopamine and serotonin. Neurotransmitters are chemicals that relay signals between neurons in the brain.
"We don't have the ability to reverse the genetic problem or to do gene therapy," said Dr. Sarah Elizabeth Zauber, Maureeka's physician and a neurologist at Rush University Medical Center who specializes in movement disorders. "Perhaps down the road as we learn about these diseases, that might be possible."
For now, those diagnosed with the disorder are treated with medication to try to restore their levels of neurotransmitters.But for Maureeka, the medication appears to have triggered periodic body movements that resemble seizures.
Unlike many parents who have sick children with more common and better understood disorders, Thomas has no idea what the future might hold. That adds to the stress.
"Nobody can give her the answer if [her daughter] is going to get better, get worse or stay like this," Zauber said. "Hopefully, with more testing we will know more."For now, Thomas would like to set up a support group and spur research.
"I do understand and accept that there is no cure for Maureeka's disease," Thomas said in her calm, quiet voice. "But I would like to find something that will make her life better."
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