Cannabis and Multiple Sclerosis (MS) Treatment

The Multiple Sclerosis Foundation estimates that every week in the U.S., 200 people will learn they have multiple sclerosis (or as it’s more commonly called, MS). People like Jabe Couch, a father and husband from the Pacific Northwest. Few conditions are as long-lasting and progressively debilitating as MS, which causes damage to the brain, spinal cord, and affects the body’s immune system. A diagnosis can be devastating.

“Running. I loved to run,” recounts Couch. But after he was diagnosed with MS at the age of 23, Couch’s previously active lifestyle appeared to be coming to an end. “Not only could I no longer run. I’d be confined to a wheelchair for probably the rest of my life.” He recalls the day when doctors put him through an MRI and told him his immune system had gone into attack mode.

While MS is universally recognized by states as a qualifying condition for medical marijuana, Couch had no desire to use a drug that he’d long associated with “lazy stoners.” Eventually, however, he had a change of heart.

What Causes Multiple Sclerosis and are There Treatment Options?

Prescription Drugs are the Most Common MS Treatment Option

MS is neither contagious nor directly inheritable. Although scientists are getting better at identifying the various factors they hope will be able to help doctors diagnose MS earlier and treat more effectively, available treatments are poor.

Doctors prescribed Couch, a native of Bend, Oregon, 16 different drugs, none of which were developed specifically for MS. “They gave me a massive cocktail of drugs,” he recalls. “Valium for anxiety. Percocet and OxyContin for pain. Ritalin [a stimulant] to keep me from nodding off.” Couch continues, “Steroids. Antidepressants. Drugs for spasms and digestive issues. And, drugs to treat drug interactions!”

I asked Coach why he didn’t consider cannabis, which by then was legal in Oregon.

“No way! I grew up with all the propaganda,” Couch says. “Cannabis was dangerous. Was the government lying? Cannabis was a Schedule I drug — just like heroin!”

But, Couch’s drugs weren’t very effective, and caused severe side effects like seizures. And they were expensive – “Ten grand per month,” he says. And even though insurance paid its share, he adds, “The co-pays still felt like a second mortgage.”

It wasn’t long before the once active, drug-free Oregonian became what he describes as, “a full-fledged boozer and pill popper.” Addicted, he’d wash down his pills with a couple of cold ones. Despite being confined to a wheelchair, “I felt like I was traveling down the freeway at 150 miles per hour destined for a really bad place. Life was spiraling out of control.”

The depression got worse. Along came suicidal ideation. It got so bad, Couch remembers his wife making sure there were no firearms in the house.

Couch’s story is not unique. More than 400,000 people in the United States (and 2.5 million people worldwide) currently live with MS. Over half will suffer depression and become twice as likely to commit suicide as the general population.

Can Medical Cannabis be Used as Multiple Sclerosis Treatment?

Medical Cannabis as an MS Treatment Option

Because multiple sclerosis is a progressive illness, things weren’t getting better for Couch. So one day after work a friend offered him a drag off a joint. He was reluctant until his dad said, “What do you have to lose?” The cannabis helped immediately. It didn’t fix everything at one time, but as he recalls, “I felt like a huge weight had been lifted.”

A significant amount of evidence suggests THC and CBD-based medications can be used for treating muscle spasticity associated with multiple sclerosis, but most studies have focused on synthetic derivatives. Few have examined whole-plant cannabis or many of the other MS associated symptoms. Nonetheless, cannabis seems to help the following symptoms:

  • Pain and sleep disturbances: According to a 2005 ”gold-standard” trial of whole-plant cannabis-based extract (oromucosal spray containing 1:1 THC:CBD), cannabis-based medication was twice as effective as placebo to treat pain, and three times more effective for sleep.
  • Inflammatory-related issues: Neural tissue inflammation is common as the body’s immune cells attack the central nervous system. The (well established) anti-inflammatory effects of cannabis can help MS sufferers.
  • Muscle spasms: A 2014 systematic review provided high-quality evidence that cannabis-based medicines were highly effective in treating muscle spasms.
  • Abdominal complaints: Many scientists believe cannabinoids help control gut response and modulate gastrointestinal issues. According to a surveyconducted by Scottish researcher Roger Pertwee, 51-60% of respondents reported a decrease in defecation urgency, a 44% decrease in incontinence, and 30% had less constipation.
  • Mood issues: Most MS patients will experience depression or at least persistent mood issues. Pertwee’s survey found that more than 90% of the MS sufferers reported botanical cannabis as improving mood.

Cannabis, MS, and The Comeback Kid

Jabe Couch, Medical Marijuana MS Patient

It’s been a long road for Couch, but today he couldn’t be happier. Since introducing cannabis into his MS treatment protocol, he’s gradually weaned himself off all the pharmaceutical drugs except for one. Couch spends time in his garden, not only growing his own cannabis (a Jack Herer strain), but also fruits and vegetables.

Couch uses a variety of methods to consume his medication. In the evening, he enjoys an indica-infused brownie to help him sleep. During the day, he’ll add a high-CBD infused butter to his omelet or vaporize strains that alleviate fatigue and give him energy. Even more remarkable, Couch claims that not only has his MS halted, MRIs show signs that it’s regressing.

But the best thing about cannabis? “For years, my face was so numb, I couldn’t feel anything,” recounts Couch. “One day the numbness started to subside. I was kissing my wife, and I could feel her soft face pressed against mine. Overjoyed, I started crying. It was one of the best days of my life.”

Source: Leafy.com

To the Bullies Who Made Fun of My Tourette Syndrome — Thank You

By Olivia Roman

Dear Bully, 

This is a thank you letter. Yes, you read it correctly — a thank you letter. I want to thank you for making fun of me when I couldn’t control my body from moving uncontrollably. I want to express how grateful I am for the times you mimicked me behind my back to your friends and would throw small objects at me while sitting on the bus. For the times you would whisper and laugh aloud to others while staring at me. Due to these experiences, you helped build my confidence, made me stronger, gave me courage. I may sound delusional, but I am speaking from my heart. That is something I can honestly say I can control.

You see, at the age of 6 years old, I was diagnosed with Tourette syndrome, a neurological disorder characterized by involuntary movements called tics. But you already know this, and yet you still decided to entertain your friends at my expense. Your lack of knowledge and insensitivity made me who I am today at the age of 13. Who am I, you ask? I am a young girl, who at 11 years old had the confidence and determination to speak and provide insight to 50 college and medical students at Yale University. You gave me the strength to face strangers and bullies and educate them about what it is like to live with Tourette syndrome and with co-occurring disorders. You also contributed to the bond my family and I have today. My mother also thanks you for making her more proactive in assisting her special education students to become self-assured and positive individuals who can make a difference just by believing in themselves. My sister (who does not have Tourette syndrome) and I became youth ambassadors for the Tourette Association of America. We had the opportunity to participate at the Capitol’s National Advocacy Day and spoke to our senators and representatives. My sister and I continue to bring awareness and education to students and staff members at local schools and camps.

Well, I really can’t give you all the credit. You were a contributor, but it’s Tourette syndrome that has created the self-reliant girl I am today. With support from teachers, doctors, my family and friends, I am who I am. As I come to the end of my letter, I want to assure you I am not upset with you, I am grateful. For me, you have given more meaning to the quote, “I have Tourette’s, but Tourette’s doesn’t have me.” So thank you, thank you very much.

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Olivia (right) and her sister Gabriella on Capitol Hill.
Source: TheMighty.com

If I Could Go Back to the Moment My Child Yelled for Me at the Hospital

By Paula Vigil

My daughter Ashley is 23 years old. Back when she was young, Rett syndrome was virtually unheard of. Add to that we live in a small town in a rural area. Ashley had so many misdiagnoses that to be completely honest, we went from one to the next from about 18 months old until she was about 3. I have to say, there were so many hospital stays that they all ran together for me and I don’t remember which one was the one where they finally nailed it. I do know I was young, single and alone, and during this time a woman sat down next to me in Primary Children’s Hospital and asked why I was crying. I replied, “My daughter is going to lose her ability to stand, feed herself, and lose the ability to say the few words she does know.”

That woman, who I believe was an angel, took my hands and said, “My husband and I saved for 12 years to take our son to England to meet my parents for the very first time. While there, he contracted some kind of illness. We are about to let him go. He is dying right here in front of us.”

I knew then and there that things could be worse. That single moment has always gotten me through every new development, no matter how frightening.

During one of her many stays in Primary Children’s, during one of her numerous tests, I had enough. I could no longer watch the blood draws for what seemed the 50th time that day, and I stepped outside the room while my daughter yelled “Mama.”

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Paula and her daughter Ashley.

If I could go back to any moment in all of history, I would go back to that moment and tell myself, Don’t for any reason at all leave that baby alone. She is going to yell for her mama, and it will be the very last time you will ever hear her speak. If I could go back to that moment, I would hold her hand, look in her eyes while she said Mama, and I would promise her I would never ever let her go again. I would be staring into her beautiful brown eyes while she spoke her very last words.

I would tell her, years down the road, little girls with a new diagnosis will have technology to help them speak and keep their abilities as long as possible. They will not have to suffer from numerous tests, because Rett will be much more recognized. You will have paved a very rough road to make it easier to navigate for those behind you. You will always be my hero. I will always admire your fight, your will and your smile. And I hope someday, older girls in rural areas will get access to Tobii Dynavox eye gaze technology, or anything that will make life even the tiniest bit easier. I love you Ashley, with all my heart.

Ashley is 23 years old. She has struggled so much, but she has never ever lost her smile.

Source: Themighty.com

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12 Famous People With Parkinson’s Disease

  • 1 / 13   Raising Awareness of Parkinson’s Disease

    Celebrities by the dozens glide down the red carpet for Celebrity Fight Night each year, the glittering Parkinson’s disease fundraiser for which Muhammad Ali has been the featured guest for the past 18 years. Ali is one of many celebrities living with Parkinson’s disease who are raising the profile of this little-understood neurological condition.

    The list of well-known people diagnosed with Parkinson’s disease includes a former U.S. attorney general, a boxing trainer, and many stars of the stage and screen. With their fame, people like actor Michael J. Fox have worked to bring more Parkinson’s disease awareness into their professions, which sometimes value physical perfection over health concerns. With about 1 million Americans living with Parkinson’s disease — and an estimated 7 to 10 million people living with it worldwide — patient advocacy helps promote research into this condition that causes, among other problems, balance and coordination difficulties.

  • 2 / 13   Janet Reno: Public Service With Parkinson’s

    The first woman to serve as U.S. attorney general, from 1993 to 2001, Janet Reno was diagnosed with Parkinson’s disease in 1995 just two years after she was nominated to the cabinet position. She was 55 at the time. “Well, my hand was shaking this summer and I thought it would go away. I thought it was maybe you all picking on me. But it didn’t go away, and so I went and had it checked out,” Reno said in a press conference at the time.

    She took medication to bring her symptoms under control. Her Parkinson’s has advanced since then, but she was able to guest star as herself in a 2013 episode of The Simpsons, where she presided in a trial in which Bart Simpson was the defendant. While Reno is a respected and admired famous person with Parkinson’s disease, she mostly shuns the spotlight.

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    3 / 13   Michael J. Fox: Parkinson’s Champion for a Cure

    Michael J. Fox is among the most well known people with Parkinson’s disease. Many remember him as the fresh-faced young star of the 1980s TV comedy hit Family Ties and the popular Back to the Future movies. Though most people with Parkinson’s are diagnosed between ages 40 and 60, Fox was diagnosed at age 30.

    He shared his young-onset Parkinson’s disease diagnosis with the world in 1998, and two years later founded the Michael J. Fox Foundation for Parkinson’s Research. Fox is committed to helping the foundation build Parkinson’s disease awareness and raise funds for research into prevention, treatment, and a cure. He’s still a working actor; some more recent roles have included characters with Parkinson’s in the TV shows The Good Wife and Curb Your Enthusiasm.

    “As long as I play a guy with Parkinson’s, I can do anything,” he said in a 2013 AARP interview.

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    4 / 13   Muhammad Ali: Fighting for Parkinson’s Awareness

    The beloved boxer Muhammad Ali coped with shaking hands and mobility challenges well before he retired from the sport in 1981. In 1984, doctors diagnosed Ali with Parkinson’s disease. Ali, philanthropist Jimmy Walker, and Abraham Lieberman, MD, established the Muhammad Ali Parkinson Center for movement disorders, a National Parkinson Foundation Center of Excellence at St. Joseph’s Hospital and Medical Center in Phoenix. It serves as a resource center for Parkinson’s and other movement disorders, including Huntington’s disease and essential tremor, for both patients and their families.

    The center works with patients and provides education and outreach opportunities to raise Parkinson’s awareness. Ali’s star power draws a lot of big names to the annual gala fundraising event Celebrity Fight Night, where he’s the featured guest. Awareness-building runs in the family: His daughter Rasheda Ali wrote a book for children about Parkinson’s disease, I’ll Hold Your Hand So You Won’t Fall: A Child’s Guide to Parkinson’s Disease.

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    5 / 13   Linda Ronstadt: Parkinson’s Takes Her Voice, But Not Her Spirit

    Known for her rich soprano vocals that fused country music with rock ‘n’ roll as the lead singer of 1960s band the Stone Poneys, Linda Ronstadt opened up about her Parkinson’s disease diagnosis to AARP The Magazine. After getting two very bad tick bites in the 1980s, Ronstadt says her health never fully recovered — but she didn’t visit a neurologist until she was unable to sing.

    “I didn’t know why I couldn’t sing — all I knew was that it was muscular, or mechanical. Then, when I was diagnosed with Parkinson’s, I was finally given the reason. I now understand that no one can sing with Parkinson’s disease. No matter how hard you try. And in my case, I can’t sing a note,” she told AARP.

    Ronstadt was initially shocked by her diagnosis, but now believes that she’d been living with Parkinson’s symptoms for years. These days, she’s learning as much about her neurological condition as possible.

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    6 / 13   Bob Hoskins: Retirement With Parkinson’s

    The British actor best known for his award-winning turn in the 1982 film The Long Good Friday and for his voiceover in 1988’s Who Framed Roger Rabbit, Bob Hoskins announced that having Parkinson’s disease forced him into retirement in 2012. He was quite private about the details of his diagnosis, but in a 2012 interview with Saga Magazine, he said, “I’m trying to retire. I’m not doing very well at it, though.” When he did retire, he announced that he would be focusing on his own health and a healthier lifestyle after leaving the acting profession. Hoskins passed away of pneumonia in 2014, at age 71.

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    7 / 13   Brian Grant: Staying Positive With Parkinson’s

    Brian Grant spent 12 seasons as a National Basketball Association (NBA) professional, playing for the Sacramento Kings, the Portland Trail Blazers, the Miami Heat, the Los Angeles Lakers, and the Phoenix Suns. As an NBA player, he was known for his positive team commitment as well as his work with disadvantaged children. He was diagnosed with young-onset Parkinson’s disease in 2008 at age 36, after retiring from the sport. He founded the Brian Grant Foundation, which is dedicated to raising awareness andinspiring those living with Parkinson’s disease to include exercise as medicine.

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    8 / 13   Freddie Roach: Boxing Trainer With Parkinson’s

    Frederick “Freddie” Roach is a boxing trainer and former professional boxer. Bryant Gumbel included his story in the HBO series Real Sports, detailing Roach’s efforts tocontrol his Parkinson’s disease with medication and continued work as a trainer. Roach, who was diagnosed with Parkinson’s in 2010, trains world-famous boxers at the Wild Card Boxing Club in Hollywood, California, which he owns. His client list has included the likes of Amir Khan, Manny Pacquiao, Mark Wahlberg, and Georges St. Pierre.

    But having Parkinson’s hasn’t dimmed his commitment to boxing, even as it’s caused his speech to slur and his left arm to shake. “I’m in the gym every day, it’s part of life. Instead of taking a vacation, I like what I do. My vacations are right here,” Roach said in a 2015 CBS interview.

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    9 / 13   Billy Connolly: Humor With Parkinson’s

    Scottish actor and comedian Billy Connolly continued on with his career after his Parkinson’s diagnosis in 2013 at age 70. Well known for his movie roles, including as Uncle Monty in Lemony Snicket’s A Series of Unfortunate Events, he is currently hosting the 2016 TV travel story Billy Connolly’s Tracks Across America. He first found out he had Parkinson’s when a fan noticed his symptoms and talked to him about showing the early signs of tremor.

    “Aye, it just happened. I think they’re very closely related, deep despair and laughing. And I wasn’t in any pain,” he said of his diagnosis in a 2014 interview reported in The Guardian.

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    10 / 13   Michael Richard Clifford: Parkinson’s in Space

    Michael Richard “Rich” Clifford began his career as a NASA astronaut in 1990. He’s since made three space flights, accumulating 665 hours orbiting the globe. Though diagnosed with Parkinson’s disease in 1994, he continued to fly. Clifford was 42 and in apparent good health when he discovered his Parkinson’s disease, signaled at first by difficulty moving his right arm and hand correctly. In 2012, the American Academy of Neurology gave him the Public Leadership in Neurology Award for increasing awareness of Parkinson’s disease and for encouraging people living with Parkinson’s to continue to pursue their dreams.

    “Everyone with PD handles it differently,” says Rich in an interview with the Michael J. Fox Foundation. “Don’t let it get in the way of living. Life is too good. Remember, keep going — the sky’s the limit.”

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    11 / 13   Maurice White: Performing With Parkinson’s

    One of the founding members of the band Earth, Wind & Fire, Maurice White noted the first symptoms of Parkinson’s disease in the 1980s while the band’s popularity was going strong. Although he was diagnosed in 1992 at age 50, he kept quiet about his disease for eight years. In a 2000 interview with Rolling Stone, he discussed his diagnosis, saying, “I traveled with the band for five years with Parkinson’s. I was treating it with medication then, and I still have it under control. It’s not taking anything away from me.”

    White was one of the most well-known musicians with Parkinson’s disease. He died in 2016 at age 74. \

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12 / 13   James Levine Continues Leading the Metropolitan Opera

  • James Levine, music director and conductor of New York City’s Metropolitan Opera, has Parkinson’s disease and, at age 72, continues to work while keeping his symptoms under control with medication, reports The New York Times. Levine has conducted thousands of opera performances at the Met since 1971 and is also an accomplished pianist. He led the PBS television series The Metropolitan Opera Presents, bringing opera to more fans through the popular show. After a two-year recovery from a crippling spinal injury in 2011, Levine returned to conducting the Metropolitan Opera in 2013 — wielding his baton from a motorized wheelchair. “I was just grateful beyond words. It was clear that I could still do this work and that the orchestra and the company and the audience wanted me to do it,” Levine said in a 2015 interview with CBS.
  • ]Ben Petrick dreamed of a stellar baseball career as a catcher with the Colorado Rockies. He played in 240 major-league games, the majority of which came after Parkinson’s disease struck him at age 22 in 2000. He retired from baseball in 2004.
  • He’s since authored Forty Thousand to One, a book whose title in part references the 40,000 Americans diagnosed with Parkinson’s disease every year. The book also recounts his experiences in major league baseball and coping with Parkinson’s disease. According to an ESPN interview, Petrick’s father was also diagnosed with the condition but maintains a positive attitude, saying that although he has Parkinson’s, Parkinson’s doesn’t have him.
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A Rett Mothers Story

A Rett Mother’s Story

Lara and Abbey

 

Rett-Syndrome-AbbeyI was young and unmarried when I discovered that I was pregnant.  The father of my baby tried to force me to have an abortion, but I refused.  He even went so far as to offer to pay me.  When I still refused, he toldme that he wanted nothing to do with “it” and that our child would suffer for the rest of our lives if I went ahead with the pregnancy.

My pregnancy was perfect.  I drank no alcohol and I ate well.  The birth itself was rather traumatic, but that is another story.  Abbey was a beautifully behaved baby though a bit slow to meet every milestone.

Just before her first birthday I took her to the doctor because she was ill.  At that point the doctor suggested that Abby might be mentally retarded.  An MRI was done but came back clear.

An appointment was made with a pediatric neurologist, who said that there was shrinkage on the left side of her brain caused by lack of oxygen during the birth process. He diagnosed Abbey with Cerebral Palsy.

There were so many tests.  It seemed as if there were millions of blood tests and urine tests as well as many others.  I was confused and frightened.  After her last vaccination she developed a high fever, but when I called the doctor, she just said I was over-exagerating.  Naturally, I went off to my local GP who provided antibiotics.

From the GP’s rooms, I went over to a nearby Spar shop.  Abbey had been sitting in the trolley eating a chicken nugget when suddenly her eyes rolled back and she simply stopped moving.  I checked for food in her mouth in case she was choking, but there was nothing.  Her breathing stopped and she turned blue all over and became ice cold.

I was absolutely terrified and started screaming for my mother (although she wasn’t there), at the same time I ripped Abby out of the shopping trolley and ran back to the GP’s rooms.  By this time she had started breathing again.  Her pediatrician was called and Abbey was rushed to the emergency rooms at the hospital where she had another massive convulsion even as they worked to bring her temperature down.

A lumber puncture was done to check for meningitus.  My poor child screamed blue murder and they would not let me near her.  Fortunately, she tested clear for meningitus.

As time went on, Abbey began to regress.  She stopped clapping and waving her hands in the normal way; she lost the ability to feed herself; she stopped saying the few words she had learned.  Rett-Syndrome-Abbey3

Then, just before her second birthday the strange repetitive hand movements began and which now prevents her from being able to hold anything and from using her hands effectively.

The Pediatric Neurologist told me it was just a bad habit and I needed to break it.  I was not happy with this so I found another Pediatric Neurologist, Dr Crutchley, but had to wait 3 months for my first appointment.  While I waited still more tests were done on Abbey.  I also took her to a pediatrician who said he suspected Angelman syndrome plus autism.

It was also during this time that my mother happened to go to the hairdresser and during a discussion, another client mentioned that her daughter also had the same hand movements and that the child had been diagnosed as having Rett Syndrome.

As soon as my mother told me, I Googled Rett Syndrome.  I was shattered!  Completely heartbroken.  The symptoms matched my daughters behavior to a T.  I felt as if she was dying.  I cried day in and day out and was constantly being sent home from work.

My wonderful dreams for my daughter vanished and left an empty space.  My little ballet dancer would never dance for her mom.  My precious little girl would never tell her mommy she loves her.  Words I so long to hear, will always be left unsaid.

When I finally saw Dr Crutchley for the first time, I decided not to mention Rett Syndrome.  He examined Abbey for about 2 hours, before sitting me down and telling me he believed she had Rett Syndrome.

You should have seen the look on his face when he told me!  I thought he was going to cry.  I told him that I already knew.  I also mentioned that her eye blinking seemed strange to me, which seemed to worry him even more.

Abbey was sent for another EEG  which came back showing that she had multi-focal epilepsy.  Blood tests were performed to check for Rett Syndrome.  It was three long months before the final result was in and Abbey was confirmed as having Rett Syndrome.

My daughter was now three years old.  She seemed not to know that I even existed.  When I got home from work, she would not even look at me, let alone get excited.  Abbey was in her own world where nothing around her existed.  She would simply sit and stare and laugh to herself.

I sent Abbey to a play group and all of a sudden she changed.  It seems that she needed more stimulation than I was able to give her.  Now she can’t wait to see me and I get wonderful hugs and kisses.  She cries when I leave the room.  Abbey puts up her arms so that I will pick her up and when she is ill, she only wants her mommy.

She has become so aware and different.  Almost as if she has been given permission to see the world around her.  She notices, watches and understands everything now.  Nothing seems to get passed her. She watches the leaves blowing and the birds in the trees. When we go somewhere new she looks around and hops about wanting to explore.

I love her just as she is right now.  I don’t want to change her at all.

We have been through so much together and it has all worked to strengthen me.  I take Rett Syndrome day by day.  I no longer look back to what might have been or ahead to what might still be.  I have settled in my heart that this is who Abbey is and how she will be forever.

Before, I could not go into a park and see other children.  It hurt too much.  Now I can go anywhere with her and feel so proud to have her with me.  I love telling people about her and about Rett Syndrome.
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Abbey’s problems and Rett Syndrome have woken me up big time and with the strength of God, I now have the courage and strength to deal with it.

Sadly, her father still throws that fact that I could have avoided this, if only I had aborted her when he wanted me to.

This was my choice!  I would not change anything if I had to do it again.  I am so glad I had Abbey.  She is my everything!

 

source:  rettsyndromesouthafrica