Sunday, May 3, 2015

Triumph over adversity

Paul Smith was born in the 1920s with cerebral palsy, a serious condition that affects the brain. It limited his ability to speak and move. Back then, people with the condition didn’t have much of a life expectancy, and as a result, he was illiterate. When he turned 16, he learned to speak, and at 32 he learned to walk. But there’s one thing very particular about this man. At the age of 11 he started to create paintings using 10 symbols of an old typewriter. You will be amazed at what you are about to see in this video.

A Brazilian man born with several severe disabilities, including an upside-down head and limited use of his arms and legs, has beaten the odds to become an inspirational public speaker, the Daily Mirror reported

As a newborn, doctors told Claudio Vieira de Oliveira’s mother to stop feeding him because he would not be able to survive, the report said...

Claudio began walking on his knees at age 8, and despite not being able to use a wheelchair because of his shape, begged his mother to attend school with other children, the Mirror reported.
"We never tried to fix him and always wanted him to do the normal things everyone else does," Maria Jose told the Mirror.

Claudio uses a pen held in his mouth to type, and learned to use phones and a computer mouse that enabled him to succeed in school. He attended State University of Feira de Santana and is now also an accountant in addition to being a public speaker.


  1. The first couple years held struggles as Alex and Levi encountered respiratory infections and a lack of good care at home.

    “The first year and a half after Alex was born, one or both boys were in the hospital every holiday,” mentioned Beth. “So it was tough and scary – because you didn’t know as much then as you do now.”...

    Today, Alex and Levi share a townhouse on campus where their nurses care for them 24/7 and live the life of an average college students outside of their routine cares. They fill their days with class, hanging out with friends, getting homework done, and either playing Minecraft or watching football (depending on who you ask).

    Myotubular myopathy, I assume

  2. The doctor spelled out for them the entire course of the disease: first his limbs would become paralyzed, to be followed by the muscles of his neck, esophagus, and tongue. "The day will come," he told Rahamim, "when a fly will land on your nose and you won't be able to brush it off. You will become dependent on other people for everything." And in the final stage, his lungs would stop working. "You have three to five years to live."
    That was 12 years ago. Three of the doctors who attended on him have since died, but Rahamim Melamed-Cohen, while completely paralyzed, is still going strong. Since the onset of his illness, he has written seven books, the latest by means of a computer that types by his eye movements. Until a year ago, when he could still speak clearly, he gave lectures on educational methodology to students in his living room. He maintains a voluminous email correspondence with readers who look to him for encouragement and wisdom. He prays thrice daily and attends synagogue every Shabbat. And he and his wife go out regularly, to the theater, to weddings, and to restaurants, although Rahamim himself no longer eats except through a feeding tube to his stomach. As Elisheva explains, "Although he doesn't eat, he sits with us." His company is obviously worth the effort. (also referenced in the comment from 5/10/15 to Quality of Life 3/24/15)

  3. One may wonder how is it possible for two 16 year old brothers to consistently maintain a 4.0 GPA, but these two manage to pull it off while also pursuing outside interests, tutoring, and playing adaptive sports.

    Both Jacob and Nathan are accomplished pianists, playing at a college level. Recently they planned, coordinated and performed a piano concert at their school to raise money for “Feed My Starving Children”. They raised enough money to provide over 1,000 meals, and as a result were recognized by Mark Crea, CEO of the foundation. When they were asked to play the piano at the Minnesota Physical Education Conference luncheon held at Wayzata High School last year, they agreed as long as they could donate any money they received in tips to "Feed My Starving Children". A side note here on determination: In 2013 Jacob broke his arm in a fall at school but didn't let that stop him – he continued to practice with just one hand!

  4. I remember when I was finished my first round of tests. The neurologist gave me his preliminary findings "you have bulbar ALS". I had no idea what it meant. He explained the severity of it to me and said he was going to refer me to an ALS specialist.

    I was there alone. Walking out of his office into the empty hallway I broke down in a fit of bitter tears. When I composed myself I headed out of the building. The first thing I witnessed stepping out, was a young man falling to the ground having a seizure. I ran to help him.

    It dawned upon me that there is still much purpose for me. I decided that regardless of the outcome of any future "tests" I would remain positive and find ways to fill life with meaning and purpose.

    This has turned my life and the lives of those around me happier and by far more fulfilling.

    We all suffer hardships and pain, it's what we do with them that makes the difference, "This is the Torah of the Metzorah".

  5. However, he (Derek Redmond) was in good form by the time of the Barcelona Olympics. He posted the fastest time of the first round, and went on to win his quarter-final. In the semi-final, Redmond started well, but in the back straight about 250 metres from the finish, his hamstring snapped. He hobbled to a halt, and then fell to the ground in pain. Stretcher bearers made their way over to him, but Redmond decided he wanted to finish the race. He began to hobble along the track. He was soon joined on the track by his father, Jim Redmond, who barged past security and on to the track to get to his son. Jim and Derek completed the lap of the track together, with Derek leaning on his father's shoulder for support. As they crossed the finish line, the crowd of 65,000 spectators rose to give Derek a standing ovation. However, as his father had helped him finish, Derek was officially disqualified and Olympic records state that he "Did Not Finish" the race.

    Redmond's struggle in the 1992 semi-final later became the subject of one of the International Olympic Committee's 'Celebrate Humanity' videos, which proclaimed "Force is measured in kilograms. Speed is measured in seconds. Courage? You can't measure courage". In 2008, Redmond was featured in the "Go World" series of Visa advertisements promoting the Olympic Games. The advertisement highlights his 1992 injury, noting that "he and his father finished dead last, but he and his father finished", narrated by actor Morgan Freeman.

    On 10 January 2012, it was announced that his father Jim would be one of the Olympic torch bearers in London for the Summer Games.(from Wikipedia)


  6. Marcie Alter is an unlikely dragon slayer. She is almost totally paralyzed. She breathes through a tracheotomy tube, and can neither speak nor eat. Yet, from her bed in Jerusalem’s French Hospice, she wages a steady battle against her own inner dragons, especially that frightening dragon that proclaims: “It’s too hard. Don’t even try, because it’s just too hard.” Marcie vanquishes that dragon daily with the sword of courage and determination.

    Marcie, aged 49, is writing her autobiography, although the only way she can type into her special computer is by moving an electrode glued to her forehead.

    Marcie recently published a cookbook , although she hasn’t eaten in eight years. (She is fed by a feeding tube to her stomach.)

    Marcie learns Torah every day, although she cannot turn the pages of a book.

    Marcie founded a Happiness Club in the hospice where she lives, although she has nothing ostensibly to be happy about.

    Marcie prays every morning with devotion and joy, although she cannot speak. A lesser soul might be angry at God for the cavernoma (bleeding in the brain) that left her totally paralyzed eight years ago, at the age of 41...

    Marcie has a myriad of excuses not to work on herself: she cannot move or talk, she is in constant pain (a 7 without meds, a 4 with meds), and just living with her total disability would be achievement enough. However, Marcie relies on no excuses and constantly works on herself.

    Inside the prison of her body, she battles negative emotions and unworthy thoughts.


  7. An incredible teenager with nemaline myopathy (video)

  8. Spend a few days with Shmuel and Refaya Klein - he’s quadriplegic, she’s paraplegic - and they’ll nearly have you convinced that their biggest challenge as parents of infant twin boys will be reducing the speed on their motorized wheelchairs. (video)


  9. Five years ago, I was in a store when an eight-year-old boy from our community saw me, came over, and said one word: “Rabbi.” I didn’t think anything of it until later that evening when the boy’s mother texted me to say that I had witnessed a miracle. I didn’t know what she was referring to until she explained that her son, Joe Greenbaum, is autistic.

    Autism is a neurodevelopmental disorder that often includes social impairment, challenges with communication, and repetitive patterns of behavior. On top of that, Joe also has a form of apraxia, an uncommon speech disorder in which the brain struggles to develop plans for speech and as a result has difficulty making accurate movements when speaking.

    The combination of autism and a form of apraxia meant that for Joe, learning to speak and communicate would be nearly impossible. And yet, through incredible tenacity on his part, and with the boundless love, encouragement, and support of his family, at eight years old, Joe successfully learned how to speak. When he said the word “Rabbi” that day, an insignificant event for most people, was for Joe and his family an absolute miracle...

    Joe’s parents were struggling with the question of if – and how – he would have a Bar Mitzvah altogether. It is hard enough for an autistic child with apraxia to learn one language, but to read and speak a second is practically unthinkable and unimaginable...

    Almost everyone around this devoted group told them it was impossible, unattainable, and an unrealistic and perhaps even unfair expectation to set, as receiving an aliyah involves the recitation of two blessings on the Torah. Nevertheless, with the support of Joe’s team, which includes his amazing grandparents, incredible therapists, as well as Rabbi Gershon Eisenberger and Rabbi Matan Wexler, Joe’s parents defiantly shut out the voices of negativity and of defeatism and tenaciously persisted towards the goal of Joe learning how to receive an aliyah and recite the blessings...

    With God’s help, this young man, who did not learn to speak until he was eight years old, not only received an aliyah this past Shabbos, but read the maftir as well. Watching Joe kiss the Torah, say the first blessing, recite the Torah reading and articulate the second blessing like any other Bar Mitzvah boy was to literally witness a miracle before our very eyes. As Joe was called to the Torah, the entire Shul without instruction, spontaneously stood and with tears in everyone’s eyes, every person listened attentively and supportively...

    Firstly, as the Chida famously taught, “Nothing stands in the way of will.” Joe has worked relentlessly overcoming all odds to be able to achieve what almost all of us take absolutely for granted. He has taught us that if we dedicate ourselves to achieving a dream, we can make the impossible a reality.

    This accomplishment for Joe far surpasses almost anything any of us have done far beyond the age of thirteen.


  10. Born without legs, Nate Denofre made a life from defying expectations: walking, running, playing high school football, hiking over steep mountains.

    But his body is wearing out.

    With two hip replacements, a dozen surgeries and a degenerating spine, Denofre, 34, may soon be confined to a wheelchair for the rest of his life.

    Before that happens, the avid outdoorsman has embarked on one last grand excursion into the Upper Peninsula woods.

    For three months, he is traveling by himself, lugging a 70-pound canoe and a backpack nearly as tall as he is.

    He's calling it Nate's Last Stand.

    "My whole life, I've heard 'you can't, you can't, you can't,' " he said. "I just don't listen. If another man can do it, so can I."...

    Doctors told his parents he might never walk, but within several years, he was using prosthetics to do so.

    Denofre has seldom stopped moving since. And there's no place he enjoys traveling more than the wilderness...

    Before retreating to the wheelchair, he wanted one last excursion into the wilderness.

    He had never been to Isle Royale off the U.P. coast, so he thought about going there for a week.

    But seven days wouldn't be enough. He wanted a grand finale he would remember for years. He began adding other places to his itinerary and, by the time he was finished, he had drawn up a three-month trip.

    During that time, he will crisscross remote stretches of the northwestern U.P., clambering over tree-covered mountains and navigating swampy streams while hacking the vegetation with a machete.

    He will fish rivers that haven't been fished in 20 years, and explore silver mines that haven't been visited in a century...

    He said he has no regrets about his active life, even if it may have hastened his physical woes.

    Paraphrasing poet Edna St. Vincent Millay, Denofre said he wouldn't have lived any other way.

    "A candle lit at both ends shall never last a night," he said. "But a candle lit at both ends gives off a glorious light."


    Also :!/groups/615324288596810/

  11. I know those fears because I've had them, too. But after meeting Trevor Thomas, not a single one of them mattered anymore. Thomas is undoubtedly the most fearless hiker walking The Colorado Trail this season.

    Thomas's trail name is Zero Zero. It represents what he sees. Thomas is blind.

    What! A solo blind hiker on The Colorado Trail? That's crazy! The trail is challenging enough. I can't walk a mile without bumping or brushing something, without stumbling over stones, rocks and roots. What about spotting that gnarly cow moose up ahead, that slippery stream crossing, those storm clouds boiling on the horizon? Plus, I've misplaced the trail more times than I care to admit.

    So just how does a blind hiker navigate 489 miles of obstacles from Denver to Durango?

    "There is no margin for error," Thomas said by satellite phone from the summit of Georgia Pass. He was sitting in a snowbank, "Loving life but getting eaten alive by mosquitoes."

    "I use every resource available and all my senses to navigate," Thomas said. He said uses echolocation, "like a human bat," to know where he is and where he must go. "Everything in the world has a particular sound, and from those sounds I can get a primitive idea of what an environment is like."...

    Thomas was blinded by an autoimmune disorder seven years ago, when he was 39. In eight months he went from thinking he needed glasses to fix some blurry vision to seeing everything in shades of gray and black. He'd been active all his life and had left a corporate sales job to attend law school. Going blind, he said, threw him into a "living hell."...

    And the most foolish thing Thomas could think of was to thru-hike the Appalachian Trail. He became the first blind, solo, unsupported hiker to accomplish that feat. After that, he took on the Pacific Crest Trail.

    Thomas calls The Colorado Trail one of the most challenging trails he has done, because of the altitude and the unsettled, often violent weather — "I can get struck by lightning just like any other hiker," he said. "I don't have any storm super-sense." And then there's the lingering snow. "Snow is a blind person's navigational nightmare. You can't feel the trail."

    The Colorado Trail is more remote than the Pacific Crest and Appalachian Trails. There are fewer fellow travelers, towns are further apart. But he does have one constant companion, who he credits for much of his long-distance hiking success — a black Labrador retriever named Tennille. Tennille guides Thomas around boulders, finds trail markers and keeps Thomas true to the trail...

    "When you're blind," Thomas said, "all you hear are people telling you what you can't do. Blind kids get an especially raw deal in life. They're set up to fail. I want to show them what's possible. I want to share with them the confidence hiking has given me in other areas of my life. I want to give back."


  12. Had I been in the hospital in Salem, Illinois, on October 1, 1987, when a baby girl was born without legs, my heart would have clenched in pity for this poor child, and my mind would have railed at the unfairness of her fate. So grotesque was her deformity that her parents chose to leave her in the hospital.

    Three months later, Sharon and Gerald Bricker decided to adopt the baby. The Brickers already had three sons, ranging in age from 10 to 14. “It bothered me,” Sharon later explained, “that there was a little girl who was left at the hospital, and she had no legs. So I thought she needed a family who would love her and take care of her.” They named the baby Jennifer, and brought her home to rural Hardinville, Illinois, a town so small that it had not a single traffic light...

    When Jen was in second grade, she announced to her parents that she wanted to become a gymnast. Her idol was Dominique Moceanu, a petite gymnast whom Jen avidly watched on television. In 1995, at the age of 13, Dominique Moceanu became the youngest gymnast to win the senior all-around title at the U.S. National Championships. And at the Atlanta Olympics in 1996, Dominique, 14, won a gold medal with the other members of the “Magnificent Seven,” the U.S. gymnastics team. Jen was inspired watching Dominique, the youngest and the smallest on the team, a true champion.

    Sharon and Gerald enrolled Jen in a gymnastics class, then a class in tumbling. Over the next four years, Jen won several tumbling competitions. When she was 12, Jen became the Illinois State Champion in tumbling. She also competed in three national meets and one Junior Olympic meet....

    Jen had always known that she was adopted. When she was 16, she asked her mother if she had any information about her biological parents. Sharon took out the official adoption papers. It was supposed to have been a closed adoption, but by a clerical error the name of her biological parents appeared at the top of one page. The name was “Moceanu.”

    Jen’s biological sister was the Olympic gold medalist Dominique Moceanu...(continued)

  13. (continued)Indeed, Dominique knew her father. Born and raised in Romania during the oppressive, Communist Ceausescu era, Dumitru Moceanu was an abusive, controlling husband and father...

    By 1996, having won a series of gymnastic championships, 14-year-old Dominique had become America’s darling. She was featured in Vanity Fair and her first autobiography, Dominique Moceanu: An American Champion, hit #7 on the New York Times Best Seller List.

    But behind the limelight lurked a dark, menacing shadow. Dominique’s father was a classic abuser: controlling, violent, and given to bursts of rage...

    At the age of 17, Dominique ran away from home and filed for “emancipation” – to be legally and financially independent of her parents. It turned out that her father had taken almost all of her post-Olympic earnings from shows and endorsements – almost a million dollars. The high-profile court proceedings left Dominique free, but feeling guilty, pained, and humiliated, as she was denounced by the media, which blazoned the headline: SPOILED BRAT DIVORCES PARENTS...

    Then, at the age of 26, married and expecting her first child, Dominique discovered that she had a sister she never knew. The most poignant parts of her memoir are her comparisons between the traumatic childhood she suffered and the golden, happy childhood Jen enjoyed:

    As Jennifer describes it, her home life was stable and full of love and support.
    Many of Christina’s and my childhood memories were plagued with fear, sadness, and occasional threats of violence. When I think about these painful times, I am happy for Jennifer that she had such a positive home life – and I can’t help but think that the Bricker home was a better place for Jennifer to grow up than mine was. …

    During our first conversation, I found myself thinking, Thank God someone was watching over her, so she didn’t have to suffer like Christina and I did.

    On October 1, 1987, in a hospital in Salem, Illinois, a baby girl was born without legs. Her sister, born intact, became a champion Olympic gymnast, showered with fame and wealth. Whose life was blessed? Whose life was cursed?

  14. She made headlines worldwide after she was born. Known as “the girl born without a face,” Juliana Wetmore’s progress has been tracked over the years by First Coast News (FCN). It recently shared an update about 12-year-old Juliana now playing the violin and graduating from the fifth grade...

    It was noticed very early in my pregnancy that something was different with Juliana. During the routine ultrasound the tech was not able to locate her stomach.

    We returned for a follow-up ultrasound and then were sent to a larger hospital which deals with high risk pregnancies. They were finally able to locate her stomach, but during that ultrasound we were told that she was not developing typically.

    Then they were confronted with the decision whether to continue the pregnancy or not. They chose life. Tami explains why:

    We were a little taken aback by the question. We are not supposed to have all of the answers, we know the one who does!...

    Some may wonder what it is like raising a child with Treacher Collins. For Tami, being a parent is being a parent, no matter what challenges a child may have:

    We have never treated Juliana as different other than her medical needs. She is expected to work hard in school and earn her grades just like any of our other children. She is expected to keep her room tidy and she has responsibilities in our house, just as everyone else does.

    Today, their family consists of parents Thom and Tami, Kendra, Juliana, Danica, Kyra, Alexis and Caleb. Danica, who is from Ukraine, also has Treacher Collins and was adopted by the Wetmores. Kyra, Alexis and Caleb are three siblings whom the Wetmores also adopted...

    As parents, our greatest challenge has been laying her on the operating table time and time again. It never gets easier. Juliana will still have a couple of more procedures done on her cheeks. Other than that, she is content and confident with how she looks.

    There have been two separate occasions over the years when as parents we have heard “she may not make it through this”. Both times the only control that we had was to hit our knees and pray healing over our precious girl.

    The family is particularly grateful for her medical team in Miami and Jacksonville, Florida. Tami says of them, “We are forever grateful for the special people who have cared for [Juliana]. Dr. Anthony Wolfe is her Craniofacial surgeon and we are blessed by his expertise in the field.”...

    The family recently moved to Texas from Florida. Tami says Juliana adjusted well and that both school staff and students “welcomed her with open arms.” Tami shared that Juliana has the same interests and dreams as other children:

    She loves to watch movies and listen to music. She will be joining the school orchestra this next school year and she is very excited about that.

    What does Juliana want to be when she grows up? Tami answered that “she has dreams of being a deaf ed teacher.”

  15. Lizzie Velasquez was born with a rare genetic disease called neonatal progeroid syndrome, which affects the development of one’s heart, eyes, and bones. Those who live beyond infancy struggle to gain weight and often look older than their chronological age.

    For Lizzie, an added side effect was painful bullying from peers and strangers...

    When Lizzie was just 17, she appeared on a YouTube video, in which she was dubbed “the ugliest woman in the world.” She didn’t choose to be shown online in this video, however. It was posted as a form of cyberbullying.

    One day, she simply got on the computer and noticed that a video of her had been viewed over four million times:..

    “It was a video posted of me with over four million views with comments saying the world would be a better place if I took myself out of it. I read every single comment thinking there would be one person to stand up for me. Not one person said, ‘She’s a child, leave her alone,’ or ‘You don’t know her story, why she looks like that.'”

    The horrific comments ranged from some people describing how unfortunate she looked, to others going so far as telling her to kill herself...

    Now, however, she says all the cruel comments have made her stronger and actually changed her life for the better. She even has her own YouTube channel, which she uses to spread messages of hope.

    Lizzie has hosted her own TEDx talk, where she’s discussed how we define ourselves, and she’s going to be starring in a documentary about her life and work called A Brave Heart, which premieres Sept. 25:..

    “It was a big slap of reality for a 5-year-old. The other kids were scared of me, pointing at me, not wanting to sit with me. I couldn’t process it. I wasn’t doing anything to them, so why was it happening to me? And I didn’t dare tell anyone.”

    Despite the ridicule, Lizzie’s parents were supportive, telling her:

    “There is nothing wrong with you, you are just smaller than the other kids. You are beautiful and smart and can accomplish anything.”...

    “I have no idea who the person was who called me the ‘ugliest woman in the world.’ I don’t know if it’s a man or a woman. I wish I did. I would send a thank you card and flowers because that video changed my life for the better.”

    Rather than try to get back at the man who posted the video, Lizzie decided to prove him wrong. Now, she is a college graduate, a motivational speaker, and a published author.

    TEDx talk

  16. My philosophy for a happy life. Sam Berns, a 17 year old with progeria.

  17. Audrey Nethery has a lot of energy.

    At a Zumba convention in Orlando, Florida, last week, everyone got on their feet when the 6-year-old girl took the stage.

    She was diagnosed with Diamond-Blackfan anemia, a bone marrow disorder, at 2 months old, but she doesn't let that stop her from dancing and singing her heart out.

    When a local gym in Louisville, Kentucky — where she's been taking dance lessons at since she was a year old — started offering Zumba classes, she figured she'd give it a try and never thought it would have the impact it's had on her life.

    Julie Haise, Audrey's mom, uploaded a video of her daughter performing a Zumba routine to Facebook and before she knew it, she was hearing from people in the Zumba community from around the world. It even caught the attention of someone at Zumba's corporate office, who called to invite Audrey to the convention.

    When she's not doing Zumba, she's singing and dancing and there was a lot of singing and dancing going on after that call," Haise told

    To prepare, Zumba corporate sent over a routine to Audrey's instructors, who then taught her, and ended up coming to the convention with her to perform.

    After a killer performance, she was overwhelmed by all the attention. Everyone wanted to take a picture with the Zumba rockstar!

    "Every time I see her dance, even when it's just in her class, it makes me cry, but seeing her up on that stage was incredible," Haise said. "When she's dancing, she's happy and brings so much joy to everyone watching." (see videos)
    Courtesy of my daughter

  18. Jacob and Nathan in the 5/13 comment above have limb-girdle dystrophy.