How measles can change a life

Ruediger Schoenbohm

Ruediger Schoenbohm

January 31st, 2013

Ruediger Schoenbohm
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‘A father’s story of pain and loss, and a plea for prevention’

Ruediger2In the early 1990s we lived in Berlin, Germany. We were young and full of plans for the future. My wife Anke was working as a nurse and I had just started my professional career as an engineer. We became a little family when Julian, our older son, was born in the spring of 1992. We built our “nest”, had great friends and neighbours, and simply enjoyed life as a young family.

As most parents probably are, we were very grateful and thankful. Two years later, during the summer of 1994, our second child, Maximilian, saw the light of day and made our family happiness complete. Back then, we had not the slightest idea of how dramatically our lives would change some years later.

Max turned out to be a blessing and a challenge at the same time: he was so full of energy and life that it was sometimes hard to keep him under control. But he was very charming, even as a baby. He won the hearts of the people around him in no time.

Max in 2005

Max_Hockey_2005

When he got sick in the winter of 1994/1995, we were a bit worried because of his young age. After all, he was only six months old when measles hit him badly. It had been way too early for vaccination, but not too early for infection. He spent several days with a high fever while his paediatrician feared that he would develop some sort of complications. And he did: his lungs got affected, he developed a dry cough, and sometimes he even had difficulties breathing. We were concerned, but had no clue and nobody had ever mentioned anything about potentially fatal measles complications.

After a few weeks everything was over. Max had recovered and as spring came around, the vivid, high-energy boy was back. What we did not know back then was that he would only stay with us for another 10 years.

When Max was in third grade of elementary school his performance in math suddenly dropped.

Initially we thought that it might have to do with his high energy level and his difficulty concentrating sometimes. But then he started showing some strange behaviours – only for short moments, but becoming more frequent. We did not realise that these were the first signs…

In October of 2004 the first seizure occurred. Max would stop doing anything – from one second to the other – he would sit and stare. Just for a few seconds or sometimes a minute. When the seizure was over, he could not remember anything. We learned that this kind of seizure is called ‘absence’.

The doctors told us that sometimes children would develop this kind of epilepsy when they were just about to enter puberty. So we thought that maybe it would be temporary and eventually go away. But there was a bad sign: Max’s EEG that was taken shortly after his first seizure was entirely abnormal. There were curve patterns that did not belong there. The doctors tried to control the seizures by a special mix of anticonvulsants. And actually it did help – for a few weeks.

Between December of 2004 and February of 2005 our beloved boy seemed to be back. We thought that finally we had everything under control and that the seizures would eventually go away. We didn’t worry about him not going to school anymore, because he couldn’t keep up with the lessons.

We ignored the fact that he could not remember things that had just happened a few hours before.

We ignored the fact that his behaviour became more…We just didn’t want to realise what was happening.

The seizures came back in March. Heavy, frequent and different. The doctors sent us to one of the best epilepsy centres in Germany at Kehl-Kork. They only needed a few examinations to confirm the worst suspicions: Max was diagnosed with SSPE, Subacute Sclerosing Panencephalitis, a late complication of an early age measles disease. Rare, but fatal – in any case, without exception.

It was very hard for us to realise that they were talking about our bright, happy, vivid 10-year-old boy.

We were numb, desperate, did not understand that the doctors were telling us that we would lose our child – no matter what, just a matter of when.

We fought hard for a long time. We spent nights on the internet seeking for rescue, for some sort of treatment that would stop us from going down the path of the inevitable. We established contacts with medical scientists in India, Turkey and the US. We imported homeopathic medicine from India; we applied ß-interferon, vitamins, fish oil, minerals – all the good stuff.

But fate sometimes is relentless: in April of 2006 our boy said good-bye forever. An unexpected thrust of brain inflammation put him into a vegetative state. Within only hours he lost everything he had learned during his young life. His last words were: “I don’t know who you are”. It’s going to haunt us for the rest of our lives.

The following years were characterised by despair, disbelief, unrealistic hope, and many illusions, by anger, and by a very slow process of realising that he will never come back. But above all, there was and still is the everlasting daily struggle to somehow survive as a family. After all, Max’s brother

Julian had just turned 12 when our family was hit by this tragedy. Didn’t at least he deserve to spend his teenage years in an environment that provided as much normality as possible?

Max in 2012

Max_Wheelchair

Today – at the age of 18 – Maximilian is still with us. His condition has slowly, but steadily worsened over the years. He can no longer sit or hold his head up. After all those years in which he could at least be fed like a baby, his chewing and swallowing capabilities have lately ceased significantly. His body temperature regulation is unstable; he has many seizures, unpredictable, sometimes strong, sometimes barely noticeable. We feed him by a stomach tube and carry him around in his wheel chair. His level of reaction to his environment varies from little to none. When a day is exceptionally good, he would laugh at Mom or Dad, or his brother, or his nurse when they caress him and talk to him.

Max will die. Nobody knows when or how, but it is inevitable. And we have no idea, if and how we as a family are going to survive this… But what drives us crazy is the fact that all of this could have been avoided, had obligatory vaccination protected more children from getting infected by measles and other dangerous “childhood” diseases.

The measles virus is extremely dangerous. Thousands of children around the world suffer from acute complications such as heart problems, deafness, eye infection, meningitis, hepatitis, bronchitis, Krupp cough, and of course the rare ones like infections of the optic nerve or SSPE.

Other severe diseases such as pox, plague, or poliomyelitis are almost eliminated on this planet, because better hygiene and protection by vaccination has successfully pushed back those infections.

So why don’t we learn? Isn’t it a shame for a developed country like Germany that measles are still an issue?

When it comes to vaccination, parents are not responsible for their own children only – their decision pro or against vaccination may have a significant impact on others! There are proven cases of babies being infected by measles while sitting in a pediatrician’s waiting room. Isn’t that cynical? One of these children died a year ago, from SSPE.

Looking back and considering how life could have been is hurtful. Max did not deserve what has happened to him. It is almost unbearable to accept the fact that under different circumstances or if we had lived in another country back at that time our child would most likely still be healthy. We have lost him forever and it is breaking our hearts. Only in our memories we still see him and he makes us smile. Sometimes the thought of him is choking us. We do not know how long Max will still stay with us, but we will care for him until the end.

*Editor’s update: It is with sadness that we report the death of Max in February 2014*

Comments

  1. Seizure

    Seizure

    November 14th, 2013

    Measles vaccine does not prevent you from getting measles, in fact 73% of kids that get measles were vaccinated for it. My Son had grand maul seizures from the mmr vaccine and they refused to give him any further injections. Vaccines are dangerous. He was never the same after all the seizures. I would rather have fate decide his life than me damage him by injecting him with disease. Besides that vaccines lose their potency over time so really….There are stories from both sides, but way more from the “my child was damaged by the vaccine” side….

    • Anonymous

      Anonymous

      November 15th, 2013

      Seizure,
      You think there are way more stories about kids being affected from getting the MMR vaccine!?!? GIVE YOUR HEAD A SHAKE, if this was the case every child receiving the vaccination would have a reaction and it would be pulled off the shelf. Canada participates in a global reporting system of vaccine side effects. If these problems were occurring like you indicate there would be results and statistics to prove it. Thank goodness the majority of the comments on here are pro vaccination, I am a nurse in Calgary, Alberta and have read the literature on vaccinations. For the people spouting their lies on vaccinations causing horrible side effects take your crap comments elsewhere. Go to Jenny McCarthy’s website and place your head back into the sand. As mentioned numerous time above all of the information in her website and books etc. is based on lies. There is NO new information about vaccines that is slowly being put out there to support the MMr vaccine causes autism.
      There is autism in my family, did the MMR vaccine cause this? Some people like to think so, was he born with it? ,ore then likely, by the time the child is receiving the vaccinations is when the parents start putting the pieces of the puzzle together. In the case of my family member he strated showing signs of autism way before he was vaccinated. Is there a correlation with the MMR vaccine and autism? Maybe, but correlation and causation are very very very different things. Are there other elements in the environment that could have brought out the autism in my family member? Maybe. Don’t forget that years ago there was no such thing as autism, now that there is an actual diagnosis yes there will be an increase of cases, but this increase is not from the vaccine. All this crap about the vaccine causing autism just started showing up.
      In conclusion of this rant, parents please please please educate yourselves about vaccinations, not just from the Internet, see a health care professional and have an intelligent conversation. Your decisions not only impact your child but the children they come in contact with everyday.

    • Illryia

      Illryia

      November 16th, 2013

      Interesting. Firstly, it’s grand mal seizure, and the term grand mal isn’t actually used any more. Yes, there are “stories” on both sides, but aren’t we interested in the facts rather than fiction ?

    • Andy

      Andy

      March 2nd, 2014

      While I don’t necessarily accept your 73% “statistic”, I’ll use it here for the sake of illustration of why it doesn’t mean what you think it means anyway. If 95% of the population is vaccinated, but only 73% of infections are in the vaccinated, the vaccine has worked. To explain this… consider a town with 100 kids. 95 are vaccinated and the other five are not. Measles comes to town and 20 kids catch it. If 75% of infected kids are vaccinated then 15 of those 20 infected kids will be vaccinated and the other five will be unvaccinated. So while it looks like the vaccinated kids were worse off, the fact is that in this example, only 15 out of 95 vaccinated kids caught the infection (a little over 15%) while EVERY unvaccinated kid (100%) caught it. This may be simplistic but illustrates the significant flaw in your “argument”.

  2. Think

    Think

    November 15th, 2013

    Good lord people use your brains! The flu and colds mutate, what makes you think these diseases won’t? It’s all about money to vaccination companies, medicine companies. Eat right, exercise, wash your hands and guess what? Your immune system would be strong enough to fight off most of what you end up with. You people disgust me with your sheep thinking. The government and pharmaceutical companies lie all because of money. Get your head out of your asses and do your research.

    • Illryia

      Illryia

      November 16th, 2013

      Can you prove the claim that it’s all about the vaccination money ?

    • Andy

      Andy

      March 2nd, 2014

      If diet and exercise were a guaranteed path to immunity, then what stops the pathogens mutating to beat this “defence”? Magic? And can you explain why, after more than 250,000 years of human evolution during which most generations ate an entirely natural diet, these disease are still with us? Shouldn’t they have been wiped out by our perfect immune systems? You might want to do some research yourself to see if you can understand the gaping flaw in your argument.

  3. Lexi

    Lexi

    November 15th, 2013

    My heart goes out to Max. My heart also goes out to all the families affected by vaccinations. I am not anti-vaccine. Nor am I going to pick up that little health pamphelt and use it as the my guide. Find out who manufactures the vaccines. Go to these websites. Read the side effects from the clinical studies. Educate yourselves and then decide. Yes, these diseases are awful and can be terribly damaging for some families. The same is true for vaccines. There is NO right or wrong answer. What is good and safe for your family is not going to be good and safe for another family. It’s just not. People react to these diseases differently the same way we are going to react to vaccines differently.

    My issue is that the gov’t doesn’t give us all the facts. They mislead and misdirect. They discredit a doctor making claims, but they have yet to conduct studies to prove safety or effectiveness of any vaccines long term. There are communities of fully vaccinated children getting sick, while their unvaccinated counterparts are healthy. So, you can blame unvaccinated kids for bringing these diseases back or they can blame the vaccinated kids for causing these diseases to mutate and become stronger in order to overcome a vaccine. Or we can all respect each other and trust that we are all trying to do our best to make the right decisions for our families.

    • Illryia

      Illryia

      November 16th, 2013

      If I had a dollar for every anti vaccinationist that claims to not be anti vaccination, I wouldn’t need my big pharma paycheck. Seriously, why not just be honest? your attempt to present vaccination benefits and risks as equal couldn’t be more wrong. The benefits from vaccination far outweigh the minute risks.

      Like all good anti vaccinationists you bring it round to a big conspiracy. It isn’t. The government doesn’t hide facts and quite frankly in the era of the smart phone there is no way it could anyway. Conspiracy theories are so last century. I call shenanigans on much of your post, and i’d like you to present the evidence as all evidence i have seen does not support your opinion that it’s the vaccinated getting sick.

      Indeed, Australia is in the grip of a measles epidemic right now. The anti vaxers are bringing it in from Bali. Verified information, anti vaxers are catching it and passing it around.

      There can be no respect for liars.

      • Lexi

        Lexi

        November 17th, 2013

        I never said anything about conspiracy theories. Both of my children are vaccinated. My oldest had a severe reaction to the MMR vaccine — yep, that’s right. It happens. After reading on the manufacture’s website, I actually found out that the reactions to vaccines were way, way higher than what the little health pamphlets would lead me to believe. So yes, I think they omit facts and mislead people. Feel free to use your smart phone to do your own research. I’ve done mine.

        I was advised by the doctor NOT to give the MMR to my second child.
        We have however done some of the other vaccines, but not all. Like the HPV vaccine, for example. Until that’s proven safe and even remotely effective, you won’t get that near my daughter. But, please, feel free to be lulled by your own ignorance. The more sheep out there like you that agree to be blind testers for vaccines, the more information we gain. For the best of the whole, yes??

        • keith Kelley

          keith Kelley

          March 2nd, 2014

          Hi Lexi
          You’re a brave lady to be thinking outside the box and speak of it. I admire that you research and question all that you do for your children medically.
          i personally don’t believe in injections unless it’s a crisis at hand.

          BTW A sad thing that they lost their boy.

      • keith Kelley

        keith Kelley

        March 2nd, 2014

        Illiryia

        Illryia
        Maybe i only move in the healthy people circles, but what happened to this ‘ Australia is in the grip of a measles epidemic right now.’ ?
        It is now March, 2014 and it is still only an outbreak. So can you have a 5 months outbreak? Or is it just a few cases here and there?
        They are saying that it is coming from overseas. Is that to dodge the fact that herd immunity doesn’t work and that it is still around?

        (1)Medical herd immunity –
        I keep asking this question and rarely get an answer-(albeit a reasonable one)

        If herd immunity works then what actually happened through the 60′ 70′ 80′ (in Australia)when they thought most vaccines lasted a life time? (they don’t) Most vaccinated people would have only been covered for part of that period, resulting in a low rate of immunization. Yet the authorities were touting that they had beaten most diseases though herd immunity.(?)
        Medical herd immunity doesn’t work!

        Again my condolences to the Schoenbohm family.

      • interesting

        interesting

        February 5th, 2015

        Illryia… you are an angry person…I can’t even continue reading this debate..

  4. Robyn Mendoza

    Robyn Mendoza

    November 15th, 2013

    Hello, my heart Aches for you family. Your son knows your love and you are very special parents. There’s an up and coming treatment for seizures using marijuana oil. I know it will not cure your son. But it could help calm his symptoms. God bless you <3

  5. L.Lafleur

    L.Lafleur

    November 15th, 2013

    As nurses with many years experience in mental health facilities my wife and I saw hundreds of examples of what happens when children are not immunized against measles. Vegetative lives extending into the 60’s or beyond. Victims unable to feed or toilet themselves etc.The British Dr.who published untrue stats regarding measles and autism was stripped of his credentials to practice medicine.He was fined over $4,000,000 and has been in prison for almost three years for gross negligence .His research facility was immediately closed by the British government,which then spent millions to try to undue the harm potential to children globally that this sham produced.Anyone who repeats these blatantly untrue and proven illegal “facts” re autism/measles is a bloody fool. Get your 15 minutes of fame by streaking a football game.Not by propagating this bile.

  6. Carolyn

    Carolyn

    November 16th, 2013

    What a terrible disease. Thank you for sharing your family’s story.
    For all those questioning vaccine effectiveness, the measles vaccine is extremely effective. Claims that most people with measles are vaccinated are frankly bullshit. 2 doses of MMR gives over 99% protection against measles. So herd immunity is easily achievable for measles if people stop spreading fear and lies.
    My children will be vaccinated. For them, and for the community. To help protect those too young (like Max), the elderly, the immunocompromised who can’t be vaccinated or in whom vaccines are not effective.
    Trust the science, not the conspiracy theories.

  7. Cecily

    Cecily

    November 17th, 2013

    Feel so much for you – I am typing this with tears flowing.
    My daughter Laine caught measles at 10 1/2 months old, 6 weeks shy of receiving immunisation, very gifted child and then at 7 1/2 years of age SSPE was diagnosed. Within 2 weeks she was blind, unable to walk or talk. I nursed her for 5 years – 5 years of just lying there, no quality of life, myclonic jerks, so much suffering, then at 12 years of age she passed. Like you I researched the world and tried so many different therapies to make her comfortable. Mogadon was prescribed for myclonic jerks but I stopped that as magnetic therapy & accupuncture stopped them. Laine reacted to the anti viral medication – which was a fight with bloody Canberra idiots to get…but that is another story in itself. I was told SSPE was rare – not so to me – as I have met way to many children with it. I have even diagnosed 3 cases that Drs missed. Years of speaking with nurses & some are immunisation nurses, there were few that had ever heard of SSPE – I want all nurses to know about it so they can educate parents that it isn’t just the measles disease but that their child could have this ‘time-bomb’ sitting there – SSPE. My thoughts are with you.

  8. Lesley

    Lesley

    November 29th, 2013

    Thank you for sharing your story. My heart goes out to you and your family. In this day and age I feel it is important to have the vaccination, but also do the research. Talk to hour your family doctor, and don’t be blinded by gossip

  9. Cigdem

    Cigdem

    January 3rd, 2014

    Mr. Schoenbohm,
    I wish to you and your family a strength to accept and live with what’s happening to Max.

    Unfortunately, I know very well the story, since it happened to my little cousin 21 months ago in Turkey. When I read your words ‘He was only six months old when measles hit him badly. It had been way too early for vaccination, but not too early for infection’ my heart hurt again. It came to my little cousin in the same way and after 11 years virus showed its ugly face. When I learned it, I tried all web sources and contacts from Turkey and outside. Then I realized the only truth : ‘there is no cure’. Because it is a very rare lethal illness, unfortunately the companies do not do investment on it. This reality hurts me more, when I think of not only my little cousin but also other kids caught this illness, because I witnessed what he went through over 21 months.

    I told these things to give you an idea how I deeply understand your situation. I hope your interview will have an effect to awake investors and to increase the attention on how measles virus is dangerous. By this way people can be more conscious on vaccination . However, even vaccination is very important, as in your case and my case there are also cases involves the SSPE patient who caught before vaccination time. For that reason I strongly hope that soon there will be a cure for the SSPE.

    We lost our kid on 29 of November 2013. It is very hard, but after seeing all, we (all my family) know that it was the best for him to go away and have a peace. This keeps us a little calm as possible as.

    Kind Regards,
    Cigdem Yucel

    • Gary Finnegan

      Gary Finnegan

      January 7th, 2014

      Deeply sorry to read this Cigdem. Thank you for sharing your story with others.

  10. Apin

    Apin

    February 27th, 2014

    Your story inpired me, so that I have to educate as many people as possible to make sure that they are completely vaccinated. I’m asking for your permission to make your story as introduction for an article I’m working on for a local magazine in Indonesia. I will mention the URL. Thank you Mr. Schoenbohm

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