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waitesd

Registered: 07/31/03
Posts: 185
Reply with quote  #1 

i was asked to post this for the Casper family. 

 

SASHA’S STORY…..

 

It is important to us that you know who Sasha Casper was.  I could fill pages with memories of things she has done in her short life.  Sasha loved God, her family, friends, and anyone in need.  She was stricken with Cyclic Vomiting Syndrome shortly after she was born.  For three years, she suffered with bouts of pain and vomiting. She cried every night and could not be laid down because of pain in her stomach.  We slept in a lazy boy for almost 8 months until she started to get better.  She would not sleep in a bed after that as she would often wake in the night with the pain and walk around until it subsided.  She was never hospitalized during this time and never diagnosed.  The doctors told us she was a bad baby….. 

 

Cyclic Vomiting Syndrome (CVS) is an unexplained functional digestive disorder characterized by recurrent, prolonged attacks of severe nausea, vomiting and abdominal pain resulting in decreased quality of life for both children & adults – men and women. Largely overlooked until about 10 years ago, millions of people worldwide suffer from this debilitating syndrome, while the clinical doctors are increasingly educated about CVS, the number of US patients diagnosed with this syndrome is climbing at a staggering rate.  There is a research center in Chicago and a support group located in Columbus.  Together, they are trying to educate people about the disease and find a cure.

When she was 4 months old, we took her to a Russian Orthodox Church in Chicago for Easter to be with Mark’s family.  This was the same church the Russian gypsies would gather from around the US to attend Easter services.  The gypsies crowded around her and told us she was a very special child of God and that we needed to make sure that she received whatever she needed. 

 

At an early age, Sasha was always doing or saying something that was uncommon for someone of her age.  There are hundreds of stories.  Sasha was very spiritual and intuitive.  She was able to tell us about things that were going to happen before they would.  Toward the end of the second grade or beginning of third grade, Sasha wrote a poem that is included at the bottom of this page.

 

We moved when she was going into the second grade.  It was difficult for Sasha to make friends in the new school.  She felt so alone during this time and decided that no one should have to go through this.  So in the third grade, Sasha decided she would welcome and be friends with all new students.  Her teacher helped her get this program started and assigned each new a student a friend.

 

In the fourth grade, she noticed some people picketing an abortion clinic.  She wanted to know all about this.  After that, she made signs so that she could picket this too.  Her signs read:  You’re not just killing our babies, you are killing our future and you’re taking away our future teachers, nurses and doctors.

 

Sasha applied for a green peace application in her early teens because she wanted to make a difference.

 

Then at 16, the cyclic vomiting came back.  The doctors did not know what was wrong with her.  She went through numerous tests only to find that everything was normal.  Then, after 4 months and 6 episodes that required hospitalization, we found a clue as to what was happening.  Mark’s brother noticed a ripped newspaper article on the bathroom floor at his place of employment.  The only piece of the headline was Vomiting….  From this, we were able to track down the newspaper it was printed in and leaned that a research center existed in Chicago.  Now we had the name of a disease and from there found the name of a local doctor that was somewhat familiar with it. 

 

That was the beginning of her suffering with this disease.  Sasha had episodes every month that lasted from 2 – 10 days.  For the first two years, she was in intensive care numerous times because of the strain on her heart and kidneys from dehydration.  During this time, Sasha would vomit bile up to 120 times per hour with pain that she could barely endure.  The intensity of the episodes subsided, but this brought on the frequency of episodes.  For the next two years, she was in the hospital every month except from May until August.  During the summer, the episodes were weekly to bi-weekly.  She started to show signs of agoraphobia, afraid to leave her home for fear of an attack.  School was very difficult, as she was constantly afraid of going into an attack while she was there.  She missed anywhere from a 1/3 to ½ during her high school years.  However, she still was able to keep her grade point average up.  She was very focused on her grades so that she could gain a scholarship for biotechnology.  Her dream was to go away to college.  A dream that could not be fulfilled due to her illness.  She did gain her scholarship to Ohio State but was unable to use it.  Instead she went to Sinclair.  With the 9 – 11 pills she took every day, concentrating on schoolwork became more and more difficult but she pressed on. 

 

Sasha met her current boyfriend, Tim Miller during her senior year.  She told us that she had met the boy she would marry.  Tim stayed by her side throughout the illness. Never leaving her side, except to go to work.  He was totally devoted to her and gave her additional strength to face each day.  By now, her bouts of vomiting came every day.  The excitement of an event or the stress from the disease would put her in the hospital.  She could not eat at any family event for fear of having an episode, or what CVS’ers referred to as cycling. 

 

A nurse at a Chicago hospital gave her a medal of the Virgin Mary blessed by the Pope.  While we are not under the Pope, Sasha cherished this medal and always had it on hand.  During every hospital visit, Sasha would hold this medal and pray for God to end her suffering.  I witnessed numerous times where the pain did subside after she would pray while holding this medal.

 

Two years ago, Sasha wanted to spend Easter in Chicago, as we had done every year since her birth.  She went in the hospital on Good Friday and stayed for 3 days.  She had been fasting from all meat during lent and was looking forward to the Easter meal.  One that she never got to enjoy; but even then she made jokes about it. She always tried to look on the bright side.

 

Last summer, she asked Mark to take her to Chicago on his motorcycle.  I protested to the bitter end and against my better judgement, they left for one week. Up to this point, Sasha was unable to travel because it always put her in the hospital. She made it through the week and had the time of her life.  I am thankful now that she was able to go.  Sasha gave Mark a Harley Davidson clock for Christmas this past year.  A motorcycle engine goes off on the hour.  One week after she died, at the time that Mark was notified of her death, the clock sounded off at 4:20 pm.  The engine went on for 7 minutes and sounded like a motorcycle going down a long road.  It has not sounded off since that time.

 

Two months exactly before her death, Sasha was hospitalized with an episode.  She was doing fine by evening, so we left her alone to rest.  She called me at 11pm to spend the night with her because she was afraid.  She slept soundly that night.  The drugs given while vomiting had worn off.  She woke the next morning asking me if I saw the nurse come in.  I told her two had come in during the night but neither matched her description.  She said she was compelled to find this woman because she felt great peace when she came in the room and she felt strongly that either she could help this person or this person could help her.  She asked all the nurses about this woman, who she could fully describe, but no one knew who she was.  I now believe that an angel visited her that night because she said she felt at peace now.

 

Dealing with people’s perceptions of this disease was the hardest on Sasha.  Since it is so rare in this area, we could only find one doctor at Children’s hospital that was familiar with this disease.  He was very helpful during this time; however once she turned 18 we had to move to Kettering hospital.  Here we were met with doctors with no knowledge of this disease.  Most of them believed that this was an eating disorder or a reaction from being abused.   At one point, Mark and I were banned from the hospital because they thought we were causing this.  Sasha was able to convince them that this was never the case.  They even thought that it was Manchausen by Proxy syndrome and that I could be the one making her ill.  After about 6 visits, they finally did some research on the disease, and contacted a doctor we knew in MO.  Dr Fleischer was on call for us 24 hours a day and we frequently took advantage of that.  He was often contacted by the doctors at the hospital for assistance in stopping her cycles.

 

People that met Sasha immediately fell in love with her.  She was kind and loving; and always-respected people no matter what they did to her.  She always tried to find the good in everyone and forgave everyone for everything.  She was just as beautiful inside as she was outside.  She always reminded us that had we not brought her up with a strong religious background that she would not have survived this long.  She often said that she would not wish this on anyone, as many would take their own life.  She also said that the first thing she was going to ask God was why would suicide be a mortal sin when people were suffering so badly.  I guess she has her answer now.

 She never asked “why me”.

 

 

We want to leave you with the poem Sasha wrote at the end of her second grade.  We believe it captures her very essence…. 

 

                        I AM FUNNY AND SMART

                        I WONDER HOW MANY TYPES OF BIRDS THERE ARE.

                        I HEAR THE ANIMALS CRY

                        I SEE THE PLANTS GROW

                        I WANT WORLD PEACE

                        I AM FUNNY AND SMART

 

                        I PRETEND I AM IN A DIFFERENT COUNTRY

                        I FEEL FANCY

                        I TOUCH FLOWER PETALS IN THE SPRING

                        I WORRY ABOUT HOW MY WORLD WILL BE WHEN I GET OLDER

                        I CRY WHEN I THINK OF A LOVED ONE THAT HAS PASSED AWAY

                        I AM FUNNY AND SMART

           

                        I UNDERSTAND PEOPLE

                        I SAY THAT I WILL FOLLOW MY RELIGION

                        I DREAM THAT SOMEDAY I WILL GROW OLD

                        I TRY TO HELP THE ENVIRONMENT

                        I HOPE I CAN HELP THE ENVIRONMENT AND MAK A REAL DIFFERENCE

                        I AM FUNNY AND SMART

 

                                    IN LOVING MEMORY.

SASHA CASPER

                                    1985 – 2006

 

                                    SHE WILL BE GREATLY MISSED….

 

the Casper family

 

dowdd

Registered: 07/26/03
Posts: 140
Reply with quote  #2 

Debra, Thank you for posting this. There are no words, as all I can do is cry, for this family, for my son, for every family that has to deal with CVS, for every mother, for every father who has to watch their child suffer, for every husband and every wife, for every extended family member, for every friend that trys to understand. There are no words except this beautiful- hearted Sasha has left us with sad hearts and she will be missed.

 

Sincerely, Deborah

BDavis

Registered: 04/11/05
Posts: 677
Reply with quote  #3 

Thank you Debbie for posting this, and thank you Casper family for sharing Sasha's story. 

I think and pray for your family everyday.

 

Sasha will truly be missed.

 

-Britt


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"I can get sad, I can get frustrated, I can get scared, but I never get depressed - because there's joy in my life."
-Michael J. Fox


Reply with quote  #4 
Sasha sounds like an angel herself and I know she is now trully one watching peacefully down from heaven, no longer suffering. Sasha is a true hero to have kept such a wonderful heart through so much pain. Blessed Be.
ginny

Moderator
Registered: 03/18/05
Posts: 3,371
Reply with quote  #5 
The CVSA CT Walk is tomorrow.  A candle will be lit in memory of Sasha and others we have lost.  I am bumping this thread back so new people can get to know Sasha.



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ginny CVSA Moderator
KRSYNENA

Registered: 02/27/07
Posts: 810
Reply with quote  #6 

I am so thankful that this was shared. I pray for her family and hope they are coping ok. She sounds like an angel.


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KRISTEN CARTAGENA
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