Charity Of The Month- Cystic Fibrosis Foundation

Michael Jackson was sensitive to all ailments inflicting children.  He made it part of his life’s mission to help children all over the world.  It is no secret that Michael donated over 300 million of his earnings to a variety of charities.  Michael opened his Neverland home to children worldwide to spend a day at the ranch so they could engage in activities of fun.  Michael wanted to ensure that children had some happiness, hope and inspiration.  Michael also knew that positivity could bring some healing, both physically and emotionally.

Michael’s heart and soul simply understood the gift of love keeps on giving.  If he could bring a smile to a child (or to anyone), he knew that power of unconditional love could brighten that child’s day, improve their world at least spiritually and have some kind of positive impact in some way.   Michael did his best to fulfill wishes and dreams, gave money to find cures and much needed medical equipment anywhere he visited.  Michael’s compassion for the children of the world healed many and made many children’s lives better, so they could live and love another day.

In April 9, 1984: David Smithee, a 14-year-old boy who suffers from cystic fibrosis is invited to Michael’s home.   Read on:

MJ Charity: David Smithee, a 14-year-old Tulsan, poses for a picture with Michael Jackson in April 1984. Smithee died in May 1984

June 13, 2010

in Articles,Kids Corner,MJ Charity,NEWS on MJ

Karen Wilson was traveling back to Tulsa from a business trip when she heard the news that Michael Jackson had died Thursday.

“It brought back some wonderful memories of my son and how special Michael Jackson treated him,” Wilson said. “His loss was terrible, and his death brought up a heavy heart.”

It was in 1984 when her 14-year-old son, David Smithee, who was terminally ill with cystic fibrosis, met Jackson at his California home.

The visit was part of a weeklong California trip for David made possible by a nonprofit organization that fulfilled the dreams of terminally ill children.

During the afternoon visit at Jackson’s Encino, Calif., home, David watched a movie with Jackson in his home theater, played video games and learned how to moonwalk.

David Smithee, a 14-year-old Tulsan, poses for a picture with Michael Jackson in April 1984. Smithee, who had cystic fibrosis, got to meet Jackson through the Brass Ring Society, an organization that fulfilled the wishes of terminally ill children. Smithee died in May 1984.

Michael_Jackson Read More

Of the video games, David told a Tulsa Tribune reporter, “I played two games with him and beat him both times.”

The visit was topped off with Jackson giving David the red leather jacket he had worn in the “Beat It” video and a beaded glove he had worn to the American Music Awards, where he collected eight awards.
David wore the jacket and glove home on the plane to Tulsa, his mother recalled.

“He was just in heaven,” Wilson said.

David, an eighth-grader at Nimitz Junior High School, went straight to the hospital after arriving home, his mother said.

While in the hospital, David showed visitors the jacket, glove and pictures of himself and Jackson, Wilson said.

David died one month later.

“Michael Jackson gave us the happiest last month of our lives,” Wilson said. “(David) died very happy.”

The visit must have made an impact on Jackson, too; he later dedicated the Jackson 5′s “Victory” album to David.

Wilson continued to follow Jackson’s career after her son’s death. She remains an adamant defender of Jackson, who faced rumors and accusations of inappropriate behavior with children.

“Despite everything that was said of him later, we saw none of that,” Wilson said. “I never, never, never believed any of it. He was alone with my son a lot and never did anything ever happen.

“I never really believed any of that.”

Wilson still has all the pictures and memorabilia from their visit with Jackson.

And she still has the jacket and glove.

“They are under lock and key,” Wilson said. “But now they’ve become too fragile to take out and touch too much.”

Ironically, Wilson was dancing to a Jackson song Wednesday night while at a convention during her business trip. The song gave her the opportunity to tell others about her son’s meeting with Jackson. “I still, when a Michael Jackson song comes on, my heart still pounds,” Wilson said.

—————–

This story has inspired me to share the importance of carrying on his legacy of giving and humanitarian work.  We all can make a difference somehow in some way.  I’d like to bring awareness to the cause of cystic fibrosis, for Michael and personal reasons.  The first part, I will explain now.  Michael was always inspired to help those in need and his heart and unconditional love for humanity and he knew some childhood diseases have no cure.  He knew cystic fibrosis at that time was terminal.  Cystic Fibrosis treatments have improved to increase the quality of life and the life span of those inflicted, but we are still a bit away from a cure.

from http://www.aboutcysticfibrosis.com/

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/

http://www.aboutcysticfibrosis.com/cystic-fibrosis-history.htm

Cystic Fibrosis is a genetic devastating and debilitating lung disease.  Although more than 1400 mutations can cause cystic fibrosis, one gene in particular accounts for the majority. A deletion at delta F508 on the cystic fibrosis transmembrane conductance regulator gene results in absence of a protein building block called phenylalanine. The resulting regulator protein does not fold properly and is entirely nonfunctional. This causes 70% of all cases worldwide.

Cystic Fibrosis is a recessive gene that is passed on through both parents who are carriers of the gene; a child diagnosed with CF must have BOTH defective genes from both parents to be symptomatic of CF. If both parents have the gene that causes cystic fibrosis, they have about a 25% chance of having a child with the disease, 50% chance of a carrier, and 25% chance that the gene is not in the child’s make up- theoretically speaking. This does not mean that one out of every four children they have will have the disease. This means each pregnancy has a one in four chances of resulting in a CF baby when both parents are carriers.

An estimated 1 in 29 Caucasian Americans have the CF gene. The disease is the most common, deadly, inherited disorder affecting Caucasians in the United States. It’s more common among those of Northern or Central European descent. Most children with CF are diagnosed by age 2. A small number, however, are not diagnosed until age 18 or older. These patients usually have a milder form of the disease. Lung disease eventually worsens to the point where the person is disabled.

CF is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder. A documented case of cystic fibrosis did not exist until around the 1930’s, though history suggests that CF had been around since the 1700’s- often misdiagnosed as pneumonia, chronic bronchitis, or whooping cough. An old German saying indicates a small awareness of the disease in that  “A child whose forehead tastes like salt when kissed will soon die.” One of the symptoms of CF is salty-tasting skin.

Cystic fibrosis causes the lungs to produce an abnormal amount of thick mucus. The sticky mucus builds up in the lungs and digestive tract, often impairing the pancreas from proper functioning and the intestinal tract from properly digesting food. The mucus is actually always present because it builds up daily and because it is so thick, it is not easy to expel. The issue with the mucus is that it is a foundation for the lungs to create more bacteria, to trap bacteria, and to be susceptible to several types of lung infections, which will cause more production of mucus due to infection.  Individuals with CF are highly susceptible to a strain of treatment-resistant bacteria called P. aeruginosa. The P. aeruginosa bacteria (or pseudomonas bacteria) attack patients whose immune system is greatly weakened, such as patients with Aids or CF. One notorious trait of the P. aeruginosa is its ability to cling to the cell lining of the lungs and to create proteins that can lead to its damage, it does not require a lot of oxygen or food to reproduce and it has the capability to create a protective biofilm shell around it, making it especially resistant to antibiotic therapy. Mucus that remains in the lungs is the perfect breeding ground for bacteria to live, especially in CF patients because their body produces an abnormal amount of mucus daily. (http://www.aboutcysticfibrosis.com/cystic-fibrosis-pseudomonas.htm)

Today, the average life span for people with CF who live to adulthood is approximately 37 years, a dramatic increase over the last three decades.
Death is usually caused by lung complications. (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/)

Now a days, about 1,000 new cases of cystic fibrosis are diagnosed each year. More than 70% of patients are diagnosed by age two. More than 45% of the CF patient population is age 18 or older. The predicted median age of survival for a person with CF is in the late 30s. (http://www.cff.org/AboutCF/)

Previously, the life expectancy was considerably less- most children who were diagnosed with cystic fibrosis live from months to early teenage years. The dramatic increase for life expectancy in the last couple decades was due to the isolation of the gene back in 1989. Medical testing and research can be very slow, however, much improvements in the treatment of CF occurred during the 1990’s. Life expectancy increased from just a few years (teens) to what is now the mid 30’s.  Early diagnosis is best.

In the 1990’s, they began experimenting with gene replacement as therapy, and by 2000, double lung transplants were on their way.  More experimentation and research is needed before a cure is actually in sight.  They have come a long way in the treatment of CF to at least increase life expectancy is 37.5 years  and there are better treatments today than even in 1980.  Perhaps in our lifetime, we will actually see a cure for cystic fibrosis.

The Cystic Fibrosis Foundation is one close to my heart personally. I have had two family members who unfortunately were diagnosed with cystic fibrosis.  They are my cousins.

My cousin was born in 1982 was diagnosed with PERMANENT lung damage from CF at six weeks old…..that is how debilitating the disease can be.  Doctors told us she would not live past the age of 14.  I was twelve years old when she was born.  I remember how she was always sick and because her condition was severe, if we had a common cold, we were not allowed to visit her.  Understand that for us, a common cold lasted no more than a few days of illness, but to her, a common cold was life threatening, produced more damage in her lungs,  and was a few weeks of a hospital stay of endless treatments.

I have such lovely memories of her.  We had so much fun together.  Never a fight or argument, and always together laughing and joking around.  Our families made sure we had plenty to play with together and the love we shared created so many precious memories.  Oh my, we sure knew where the fun was. 😉  At times, I don’t know who had more fun, us or the adults watching over us.  We used to make up our own rules to games and everything.  There were many times when my cousin would have her treatments and then be ready to play moments later.  She had such a strong spirit in her, we could barely keep up with HER at times!  When she was feeling bad, we let her curl up with us with a blanket, and still, her light shined brightly in her eyes.

My beloved cousin was a beautiful person.  She was full of pure love and had a never-ending supply of hugs.  She knew there was no cure for CF, but humbly and with all the strength and love in her spirit,  she tried to live and love the best she could – and she sure did.  She was not always optimistic and had difficult times, but all her family members were there to give her strength and love to endure another day.  We never let go of her hand.  Many times, she spent weeks the the hospital on end, even check ups, because at times, she would have additional therapy during her visits.  She endured antibiotic therapy, endless breathing treatments, medicines and enzyme therapy.   She endured pneumonia several times and lost several friends (who had CF) every year and still, she kept her head up the best she could.

At the age of 14 (1996), her condition was considerably worse and was given six months to live.  New treatments only benefited her so much though.  However, my cousin defied doctors and lived beyond the six months.

Sometime in the 1990’s there had been some tremendous advancement in treatment and lung transplants.  In a CF patient, they learned it was better to transplant both lungs or otherwise, the disease would transfer to the new lung.  She was considered a candidate for a double lung transplant only after all methods of treatment were not as effective anymore.  She was conflicted, but after talking with family and then thinking it over, she agreed to have the transplant.  We were all asked to consider giving her a lobe, pending tissue and blood match.  No one in my immediate family matched, but her mother and uncle did.

She underwent surgery in April 1999 and had both lungs replaced with a lobe from each of her mother and uncle.  We eagerly awaited…and prayed….life expectancy for her if this was successful would give her another an estimated 1-5 years (if lucky, 10 years).  We all wanted her to have a chance to live her dreams.

My cousin made it through the surgery and lived another year.  It was amazing to see her planning her future and living life, and breathing like she never could before.  She looked really good, happy and healthy after her surgery.  It was beyond wonderful to see her embracing her new life, the future, and lungs- especially to see that light in her eyes shined brighter then.    She told me she felt like a normal person and that she REALLY “liked that breath of fresh air”.   I got a chance to see her LIVE like she wanted and dreamed…and it was the most beautiful blessing and gift ever.

Every time she wrote me, she would tell me what she was up to and always apologized she didn’t have the time to talk like she used to – but I cared more that she was enjoying her life and doing all she wanted to do. I told her every time she apologized: “no apologies, go, live, be happy and keep in touch” when she thought to.  I kept every email she wrote me.   She did very well for a while.  🙂

I don’t remember how long she was doing well precisely, for it took about 2-3 months after she had surgery where she had to stay in Boston for testing etc.  She was doing well when they released her home (back to NY) that summer.   She had times of checkups afterwards, and some illness I believe sometime in the winter months, but she always managed to bounce back.  February came and I believe it was then, she had some issues with pneumonia but this time, she couldn’t shake it.

My beloved cousin passed away a few weeks before her high school graduation and the day she received her college acceptance letter.  I was really excited for her when she told me she applied to college….something she thought she would never get to do…..I wanted to see her go and achieve all she dreamed.   I wanted her to be really happy and healthy.

…….She just turned 18 that February in 2000.  We were all devastated.

It took me a bit of time, but I was thankful to the heavens for giving her that year to enjoy life and a new breath of air that she so desperately craved.  Her story was in the media several times….her funeral was humbling, and very loving.

My aunt and uncle gave her the acceptance letter for college to take with her.  She had a procession fit for a princess and there were roses everywhere.  (She loved roses). Her high school color guard team stood at the entrance of the church as to welcome everyone and her high school band marched for her in front of the car…to the drum of a single beat each of the other band members were holding a single rose instead of instruments.  They later played “The River Is Wide” at the cemetery.  As she wanted, a cute guy with his bagpipe played Amazing Grace (she LOVED cute guys and bagpipes).  It was amazing to see so many come to pay their respects to her and her family.  The lines of people to come see her and express condolences to our family extended three blocks, police had to close off streets and oh my….it was overwhelming.

The second person in our family to have CF is her brother.  He was born in 1993 and diagnosed before he was born.  He has a life expectancy of about 30 years old or so and he is doing well, though he has hard times.  He remembers his sister and misses her every day.  He too is such a spitfire…as she was too. He’s very creative in art and has a very deep soul.  😉

I pray every day that they find a cure for CF and perhaps, in her brother’s lifetime, they will find one.  I think about all the families affected and all the issues….and my heavens, if researchers can find a cure, I think of all the blessings that come from it.   I am forever blessed by my cousin and my family.  For that, I am forever grateful.

If you can, please donate to this cause.  Not because I have appealed to you with all I’ve shared, but because it is such a harsh childhood disease that seems well on its way to better treatment- each step they take in improvements in treatments is another step closer to finding a possible cure.  They now have a drug called Pulmozyne, a FDA approved drug that helps patients with cystic fibrosis through its ability to reduce lung infections by breaking down the excessive mucus caused by CF production.  This ability allows the patient to expel mucus preventing it from building up.  It is the first pulmonary medication specifically for CF patients.  Fewer lung infections means less opportunity for scarring and damage.  Future research focuses on transferring altered genes into the system successfully, the use of altered viruses, synthetic vectors, fat capsules, and manipulation of proteins produced by cystic fibrosis genes to better pulmonary functioning.

I cannot tell you how important research is for disease control and cure.  The life expectancy as of 2005 has increased exponentially from the 1970’s- from a few years to 37.5 years.  I would like to see that increase to older age.  Unless you have seen someone with CF go through the extremes that my cousin did, you really don’t know the extent to how debilitating CF really is.

There is not a day that goes by that we do not think of her.  There is not a day that goes by that I do not remember the love she shared with everyone.  She was our blessing.  And still is.

This post is my dedication to her and Michael for the love they shared.  She would have been 30 years old this Feb. 18th.  Forever in my heart…

donate here:  http://www.cff.org/GetInvolved/ManyWaysToGive/

Lovelightmagic

Resources

http://www.cff.org/UploadedFiles/treatments/CFCareGuidelines/Respiratory/Lung-Transplantation-In-CF-Chest-1998.pdf

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167/
http://www.cff.org/AboutCF/

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