Do you know a caregiver who performs in extraordinary ways? Who gives their time, support and compassion regularly through caring for someone else in a meaningful, selfless manner?
If so, click below to nominate them for a 2012 BRAVE Award, and they could win $10,000 USD from Shire.
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"I love what I do. I love seeing others benefit from what we're doing."
Christine’s son, Ben, was diagnosed with Duchenne Muscular Dystrophy when he was two years old. Most patients lose the ability to walk by age ten and rarely live past 18.
Thanks to Christine’s strength, inspiration and care, Ben learned to ride a bike at 6, walked until he was 14 and is today a thriving 26 year-old, living on his own.
Over the years, Christine became accustomed to helping Ben with his daily tasks, from bathing and dressing him when he was younger, to helping him in and out of his wheelchair as he grew older and his disease progressed.
She “moved mountains” to get him into mainstreamed middle and high schools. He then went on to earn his college degree, actually living away from home for the first time and discovering that he loved his independence.
Another love he discovered in college was wheelchair soccer. But when Ben returned home from college, he discovered there was no wheelchair soccer in his town. Knowing how disappointing this was for him, Christine went to work.
Not only did she start a wheelchair soccer league in their town, she founded an entire non-profit organization. Through the organization, she’s established a wheelchair soccer league (the non-profit served to provide needed insurance for the league) and helps other young people with disabilities lead productive, self-directed lives.
Thanks to Christine, Ben is a happy, thriving young man with his whole life ahead of him. And thanks to her foundation, others with disabilities are leading similar happy, fulfilling lives.
ADDENDUM: Ben passed away in April of 2012, after having lived a full life. His memory will live on thanks to the hard work of his mother and the foundation she created on his behalf.
"There will always be good times ahead."
In March of 2000, Doug’s wife Radene was on her way to realizing her acting, singing and television reporting dreams. Those dreams were shattered in March of that year when the plane she was reporting from crashed.
The crash left Radene with a concussion and a severely damaged spine. Her spine injury and pain were so severe doctors weren’t sure how to treat her. Over the years, some doctors thought she might be faking it and some went so far as to perform what Doug and Radene later realized may have been unnecessary procedures in an effort to subdue her pain.
Today, Radene suffers from multiple pain-related conditions including Reflex Sympathetic Disorder, Adhesive Arachnoiditis (caused by one of her many surgical procedures) and Intractable Pain. Standing, and even sitting, is sometimes excruciatingly painful.
In the spirit of doing whatever’s necessary to comfort his wife, Doug purchased a large SUV and equipped it with a mattress in the back so Radene could lie down comfortably any time they had to drive for more than 30 minutes.
He also does virtually all of the cooking for himself and his wife. And he designed and built a “bed desk system” for Radene so she can lie down or stand while doing advocacy work on behalf of others living with pain similar to hers.
Before her accident, Radene was an avid painter. In the years immediately following, she stopped painting. But one of Doug’s proudest moments as her caregiver was watching her pick her brushes back up and start painting again. It was a sure sign that her optimism and ambition had returned.
"I'm only telling my story because I want my husband's memory to be honored."
Jennifer married the man of her dreams in 2003. The fact that the man of her dreams had Cystic Fibrosis didn’t faze her one bit. As their life together progressed, so did his disease. Undeterred, Jennifer studied the disease, learning as much as she could so she could help him live a normal life.
Jennifer diligently made sure her husband took his medications and drove him to his monthly doctor’s appointment two hours away.
When he reached the point where he needed a lung transplant, every hospital in their home state turned them away, denying him surgery because he also had Hepatitis C. She kept her chin up, and promised to “take him to every hospital in the country” if that’s what it took to get him surgery.
Finally, she found one hospital that would perform the transplant. However, a lung transplant was the only transplant surgery her insurance wouldn’t cover. No problem; Jennifer just sued the insurance company and finally won.
She was never prouder, and he was never happier, than the day of his transplant. His recovery took eight months in a hospital five hours from their home. But Jennifer made sure to be there for him every week.
Everything Jennifer has done since they’ve been married–from fighting for a promotion at work so they’d have the insurance they needed, to suing their insurance for his lung transplant surgery–has been done to make his life better.
Her husband couldn’t have asked for a stronger supporter, caregiver or wife.
"I know I'm a part of helping him learn and try to get ahead, and I'm watching him grow."
Jennifer’s son Brandon was 19 when a motorcycle accident left him paralyzed from the neck down, breathing through a ventilator. Nine years later, thanks to Jennifer’s dedication and perseverance, Brandon has a 4.0 GPA, is on his way to becoming an art professor and has recently learned to drive.
After his accident, Brandon spent four months in the hospital, with Jennifer by his side day and night. She vowed from day one to take him anywhere to “get him moving again.”
And she’s been doing just that, taking him to every therapy center she can find. In the process, she’s learned to become his physical therapist, occupational therapist and nurse. She spends up to five hours every morning getting him ready for the day–bathing him, dressing him, exercising his legs, preparing his meals, shaving him and brushing his teeth. Every night, she prepares him for bed. She also transfers him in and out of his wheelchair, makes sure he’s sitting as properly and comfortably as possible and manages his prescriptions and doctors appointments.
Over the years, Brandon has been hospitalized several times, sometimes for weeks at a time, and Jennifer is by his side every day. One of Jennifer’s proudest moments as Brandon’s caregiver–as his mom–was when he recently surprised her by doing his entire nightly routine, including getting himself out of his wheelchair and into bed, on his own. It was an exhausting yet triumphant accomplishment for both Brandon and Jennifer.
Jennifer has spent the last nine years at Brandon’s side while she herself suffers from the several autoimmune deficiency diseases that cause her extreme fatigue and pain. But, as Brandon will attest, she never complains of her own health; she’s only focused on his.
"That's the reward…she's loved and she knows how to love back and she's happy."
Sophie was just a baby when she first came into Joan’s life as a foster child nearly 12 years ago; Joan and her husband served as intermediate care providers for a local adoption agency–meaning they took kids in while other adoption plans were being made for them.
At the time, Sophie’s leg and hip were in a cast, and she had other signs that pointed toward a possible Brittle Bone Disease diagnosis. Under Joan’s care, however, Sophie’s fractures healed, and she showed no other ill effects of Brittle Bone.
The diagnosis doctors finally arrived at for Sophie was actually more severe: she suffered from Shaken Baby Syndrome, meaning she’d most likely suffered unseen brain damage as well as the already-healed physical damage.
Joan happily adopted her, and Sophie quickly became part of the family. Joan strives every day to give Sophie as normal a life as she’s given Sophie’s siblings, a life that any child deserves. She made sure Sophie received speech therapy when she needed it. Sophie has an aide in class with her, she’s in fifth grade now, and her classes are modified to her abilities.
One of the most difficult things about dealing with a child who was shaken as a baby is not knowing how severely damaged their brain is. Sophie is no different; as time goes by, her affected functionalities change, which means that Joan’s method of care for her must change as well.
Through it all, Joan’s care has had an enormously positive impact on Sophie. She’s in band, learning an instrument, and she even had a role in a play with her older sister.
As much as possible, thanks to Joan, Sophie’s a regular kid.
"It's just a matter of finding the courage you already have in you."
In 2003, Maria’s husband Adam became one of the many soldiers injured in the war in Iraq. After recovering from those injuries–with help from Maria, who stopped working to be by his side–Adam was sent back to Iraq only to return home in 2005 with more severe injuries.
These new injuries–to his heart, spine, bladder, bowel, nerve tissue and brain, as well as paralysis of his left leg–required Maria to give up her job again and become his full-time caregiver.
Not having anyone to help her take care of Adam didn’t deter Maria. As she so eloquently puts it, “In sickness and in health, right?”
With that attitude, and without expecting anything in return or ever thinking about herself, she has spent the last six years doing whatever needs to be done for Adam. She’s helping him recover physically, she’s become his advocate whenever necessary and she’s had to explain to their two young children what’s going on with Dad.
Whenever Adam gets frustrated, Maria is by his side to keep him moving forward. When he had surgery for spinal implants earlier this year, Maria was by his side, helping him stay positive during recovery.
As Adam, a veteran, likes to say, Maria balances taking care of the children, caring for him and running the household “with military precision.”
"Thinking outside the box…we can really treat those with disabilities…so much better."
After receiving his degree in Philosophy and Religious Studies, Matthew and his then-girlfriend Constance–“Consey” as she’s known to close friends and family–moved to San Francisco where he’d just been accepted to a graduate Philosophy program.
One rainy afternoon in 2007, the front wheel of the Vespa they were riding together got caught in the trolley tracks along the street and Consey was thrown from the scooter. In a coma, she was rushed to a local hospital and diagnosed with traumatic brain injury.
Convincing doctors to keep Consey on life-support was only the first battle Matthew would win on her behalf. After an eight-week coma, Consey found that not only had Matthew stayed by her side, but he’d also vowed to help her fully recover.
Over the next two years, he followed her as she moved through several nursing homes and rehabilitation hospitals. Matthew finally got Consey into “Community Rehab,” moving with her into a handicapped-accessible apartment where she can live and recover among friends and family and take an active role in the community.
Matthew bathes Consey, does her hair and makeup, dresses her and manages her schedule. He also moved his mother into an apartment down the hall so he and Consey have the support they each need.
Matthew has helped Consey to be productive and find new meaning in her life, securing work for her at the local Renaissance Fair, one of her favorite pastimes. And he has refocused his career goals, now working toward his Masters in Healthcare Management on his way to a PhD in Public Health.
As soon as she’s able to walk down the aisle on her own, Matthew and Consey plan to get married.
"I just try to help and support whoever needs it."
Micky has spent over a decade caring for those who spent their early years taking care of him: his parents. His caregiving began, however, when his wife’s mother died. His father-in-law, left alone after her death, broke his hip. Living with Micky and his wife, Micky’s father-in-law recovered physically but relied on Micky and his wife to help raise his spirits.
Then Micky’s father had a stroke. With his father in the hospital, Micky soon found out what kind of shape his mother was in.
The news wasn’t good. She had advanced Alzheimer’s disease–she often compliments him as many as six times every morning on his breakfasts–and could barely walk due to severe arthritis.
Today, Micky has basically given up his own life to care for his parents and his father-in-law. Every day, Micky gets his mom out of bed, dresses her and gets her into her wheelchair. He then does all of the cooking, cleaning, laundry, medication administration and incontinence care for his three elders.
He does all of this in his own house, which he also shares with his wife, daughter, son-in-law and three grandchildren. And as far as Micky’s concerned, it’s all just part of the natural progression of growing older. People get old, and we take care of them.
Micky insists that what he’s doing doesn’t make him special. That he’s no hero. That anyone in his position would do the same. His parents and father-in-law, however, beg to differ.
"They're my girls. I don't think about it. I just do it."
Fourteen years ago, Natalie’s daughters, Lauren and Claire, were diagnosed with Spinal Muscular Atrophy (SMA), a progressive disease that leads to loss of muscle control and movement. Lauren was two-and-a-half and Claire was just one.
Sixty percent of infants diagnosed with SMA die before age two. However, thanks to Natalie’s strength, care, love and determination, her daughters have defied the odds and become young teenagers. And every day, for the last 14 years, Natalie has been there for them day and night.
Literally.
Every night, she checks on the girls every two hours to make sure their breathing is normal and to turn Claire, whose condition is more severe, since Claire can’t move or turn herself.
Every day, Natalie helps her girls bathe, brush their teeth, dress, eat and get into their handicapped-accessible van so they can attend school. For 14 years, Natalie has been her girls’ arms and legs. But, as she’ll tell you, “they deserve it…they deserve respect and full lives.”
In the early days, these tasks were easier–the girls were toddlers. Today, however, the girls are larger and heavier, so every task becomes more difficult for them as well as for Natalie. Not that Natalie ever complains.
Lauren and Claire themselves are living testaments to their mother’s strength and selflessness. When asked if she could have one wish come true, Lauren–the older and more mobile of the two–said she wanted to see her sister Claire walk since she’d never had that chance.
Any parent would be proud to raise such caring, unselfish children. The fact that Natalie has done so under such conditions is truly remarkable.
"I will fight for her…I want her to have everything."
Ronna’s daughter, Amanda, was diagnosed with Rett Syndrome in 1991, when she was three years old. Since that day, Ronna has been her constant caregiver.
Today, 20 years later, Ronna dresses and changes Amanda, feeds her and gets her ready for bed. Every day. Getting her ready for bed means setting up her feeding pump, measuring the food and making sure there are no leaks, stoppages or kinks in the feeding tube.
Ronna does this every day, all by herself, while also raising three other children diagnosed with ADHD, Bipolar Disorder and more. When times get tough, instead of complaining and giving up, she turns to her church and friends for support.
And through it all, Amanda has taught Ronna that she, Ronna, is a true fighter at heart, fighting on Amanda’s behalf for everything she needs and deserves. In fact, one of Ronna’s proudest moments was the day Amanda was approved for a three-month trial of an “Eye-Gaze Communication System”, which lets Amanda blink to “talk” with family and friends. It took persistence and dedication on Ronna’s part to achieve this goal of receiving permission for this unique communication system.
One of Ronna’s biggest, yet simple, joys was watching Amanda finally talk with her friends at church, and hearing Amanda asking them over and over again, “How are you?” with the passion and enthusiasm that those without a disability take for granted.
Ronna herself is awaiting surgery, but there are no programs in her area that will provide nursing care for Amanda while Ronna recovers from surgery. As a result, and in the spirit of the true caregiver that she is, Ronna is delaying her needs, choosing instead to put her children and their health and happiness above her own.
"This isn't just for me and my situation, it's for the next child down the road."
Rosemarie’s intuition has been her guiding light as she’s cared for her son Chase over the last 17 years. Chase was diagnosed with a mucopolysaccharidoses (MPS) disease when he was three years old. But even that diagnosis was a difficult one for doctors to make because his condition didn’t follow the “normal” progression of the disease.
And that’s when Rosemarie’s intuition took over. She just “knows” when something isn’t quite right with Chase. At one point, when Chase was only four, she was convinced he had carpal tunnel syndrome. Doctors told her it was impossible for a four year-old. But when Chase was anaesthetized to undergo dental surgery, she had a world-renowned surgeon take a look at his hands. The result? Carpal tunnel syndrome readings that the doctor described as off-the-charts.
Over the years, she has rarely left Chase’s side, and time and time again, she’s had to fight to convince doctors that Chase has needed help for conditions they thought he didn’t really have. Because his progression with MPS is so radically different from the “norm”, doctors–and Rosemarie–have no idea what to expect next.
As Chase’s mom first, and caregiver second, Rosemarie has always puts his needs and happiness first. She fought to get him into the mainstream public school system. And she was so proud to follow his bus to and from school every day, watching him excitedly take part in a normal life while still being close by in case he needed her.
Today, at 20, Chase is non-verbal and bed-ridden. Rosemarie spends every minute by his side, sleeping in his room every night. Whenever he needs hospitalization, she won’t even leave his side to talk to the doctors; they have to come to her.
And, as a tribute to her courage and intuition, Rosemarie one day noticed a note on the intensive care ward board that read, “If Chase’s mom calls, listen to her. She’s right.” When it comes to her son’s health, Rosemarie is not just his caregiver; she has become part of his medical team. But first and foremost, she’s his mom.
"Caregiving isn't about me. It's about the people I love."
Suzanne has spent the last 15 years caring for the three people she’s closest to – her mother and her two sisters.
Suzanne’s mother had Multiple Sclerosis and was being cared for by Suzanne’s father until he died in 1995, leaving Suzanne as her mother’s primary caregiver until her mother also died.
Suzanne was then forced back into the role of primary caregiver when one of her two sisters was diagnosed with cancer. Suzanne cut back her work schedule at a veterinary hospital and as a pet-sitter to take care of her. Then, in 2007, her sister suffered a stroke during heart surgery and remained paralyzed, in a coma, afterwards.
Suzanne cut back on her work hours even more to take care of her. In 2009, Suzanne’s other sister, Clare, took ill–being diagnosed with Stage 4 cancer in her lungs, kidneys and other organs.
Suzanne eventually gave up working altogether to take care of her sisters. She now devotes all her time to her one surviving sister, Clare, the one diagnosed with cancer in 2009. After depleting her personal finances, Suzanne has moved in with Clare and cares for her 24 hours a day, making sure she’s fed, dressed, bathed, getting to her doctors’ appointments and enjoys her days as much as possible.
Suzanne does all of this without complaining to friends or neighbors. And through it all, she’s been dealing with her own debilitating disease, which she was diagnosed with in 2002. But she continues to care for her sister with strength and dignity, making sure that Clare’s days are filled with love and joy.
ADDENDUM: Clare passed away in January of 2012 with her beloved sister by her side. She will be remembered by those who knew her for her smile, kindness and generosity.
"Being Brandon's mom and caregiver is such a challenge and such a gift."
Vickie was already a single mother of two when her son Brandon was born with Agenesis of the Corpus Callosum (ACC), a disorder in which the structure of the brain that connects the two hemispheres is absent. This severe form of brain damage meant Brandon would always have difficulty breathing, moving, even digesting food.
Vickie knew Brandon’s life would be full of challenges. Luckily, she worked at the same hospital where he was born and where he spent his first eight months in intensive care. This meant Vickie could continue working to support her family while seeing Brandon every day and learning everything she could about ACC.
When Brandon finally did come home, it was with a trach for breathing and a feeding tube for eating. Vickie was no longer just Brandon’s mom; she was also his caregiver and chief advocate.
She feeds him, bathes him, manages his doctors’ appointments, remains by his side during hospitalizations, gets him to a special needs school whenever possible and makes sure everyone treats Brandon with love and respect.
All of this care paid off tremendously just after Brandon’s fifth birthday. Three days after turning five, with no warning, Brandon rolled over, pulled himself up and took his first steps. Unlike most ACC patients, who progress very slowly, if at all, Brandon kept going. He was running by seven. And today, at nine, he’s learning sign language and running around like a preschooler.
During the nine years she’s taken care of Brandon, Vickie has suffered from several serious illnesses of her own and undergone multiple operations. But never once has she taken her focus off her son and daughters. After all, as she likes to say, “There’s only one Brandon, and he’s my Brandon.”
"I don't know about the word caregiver. I'm their father."
Most people couldn’t imagine how difficult caring for a handicapped child can be. Zarrar cares for four. His three daughters, all in their early teens, suffer from a form of Mucopolysacchridosis (MPS) and one of his two sons is autistic.
His daughters’ condition causes hyperactivity, hearing loss, sleep disorders, loss of speech, mental retardation, blindness and dementia. Most MPS patients die before the age of 15. Even with this knowledge, Zarrar approaches every day with a “glass-half-full” attitude.
He gives his daughters, who become less mobile every day, and his son as normal a life as possible, playing outside with them, taking them to the local parks and on mini-vacations. He’s also working on renovating his house, making it more accessible to his girls.
Zarrar, along with his wife, are constantly dealing with the everyday feedings and consistent needs associated with caring for four handicapped children, three of whom can barely function on their own.
Yet Zarrar remains unfazed by it all. His personality is one of giving help, not asking for it. His greatest joys in life are his children. And he strives every day to fill their lives with as much joy as they’ve given him.
Through it all, he has the same reply for anyone who commends him for how much he gives his family. He tells them his wife is the true hero, not him. And that speaks volumes for how selfless and inspirational Zarrar really is.
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