How measles can change a life

Ruediger Schoenbohm

Ruediger Schoenbohm

March 9th, 2013

Ruediger Schoenbohm

‘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


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


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*


  1. Alli


    February 10th, 2015

    I am so sorry to hear this!!! I am currently researching info on measles since I am from California:/
    As a parent my thoughts are dear to yours! If your heart is open to some answers on about death from the Bible…I have shared a link below. I am so very sorry for the nights of worry and pain you and your family must have felt.

  2. k


    February 20th, 2015

    So sorry for your sad circumstances. Normally, infants would not get measles if their mother had had them…she would pass on natural immunity to her breast fed child, which would last until the child was about 5 years old. This unfortunate circumstance is a direct result of vaccinating for a childhood illness.

    • Ronald Segear

      Ronald Segear

      October 20th, 2017

      Hi.. I know it’s tough. I got the Epilepsy from the measles to since I been 2 and I am 43 here. I was on Dilantin most of the time for it over 30 years until it started making my folic acid get low.. I am on Zonegran and Lamicital now for my epilepsy know it’s tough everytime I get a Eeg done it is bad activity all the time I have 24/7 brain activity and I got brain damage to from it over the years it shows up on a MRI in my left temporal lobe area.. I get them kind of seizures to the grandmals I usually get in my sleep.. Over 40 years I been getting it here.. So sorry your son is going threw that there.. I believe it’s a very rare thing.. I hope he has a chance to live as good as I have god bless you all there

  3. Anonymous


    February 20th, 2015

    Some of u people r so rude to the ones that express their stories of how vaccines have hurt them or their family n friends we all have the freedom of speech n people like to know all of the pros n cons of vaccines before deciding whether to get their children vaccinated or not its their choice and people should stop blaming others for what happens everyone makes their own decisions on what to do with their families everyone is different and react to things differently im am so sorry about what happened to max i cant imagine how i would feel if that would happen to my son i know i will still love him the same as always u have a very strong family my blessings to u all may god bless u in the years to come thank u everyone for sharing your stories god bless

  4. me


    February 20th, 2015

    Some of u people r so rude to the ones that share their stories on how the vaccines have affected them or their family n friends everyone has their right to freedom of speech some people like to hear stories of the pros n cons of vaccines before deciding whether or not to get vaccinated everyone makes their own choices good or bad and they have to live with them n hopefully learn from the bad choices everyone is different n everyone reacts to things differently everyone does what they think is best for their family and shouldnt be blammed for their choices because it may be best for their family and not yours u dont know everyones situation u do what u think is right n best for your family im so sorry to hear what happened to max. u have a very strong family to be able to come this far and share your story with the world congrats to that and keep staying strong for the years to come your family has my blessings and sincere apologies may god bless your family in the years to come. God bless u all and thank u for sharing your stories.

  5. Binu


    April 5th, 2015

    Dear Mr. Schoenbohm
    So sorry to hear your story.
    Unfortunately our daughter was diagnosed with Measles and recovered from it a couple of weeks before. Afterwords every now and then she gets fever, cough and diarrhea. From whatever you have learned from your experience can you please advice what we we can do to best care for or child. (Need not be a technical or authoritative one, but we would like to hear from what you learned from experience).

  6. Shameerah


    April 19th, 2015

    Deepest symothy 2 u nd fam of Max may his soul live on thrw ur other son nd the things he loved. I’m a young mother of a daughter a beautiful 1 she has the desease SSPE had measels only @ 3months she fell sick in 2014 June we miss our queen that’s the meaning of her name she was full of energy bright loveable pple loved her the moment they met her she was nd still is our little queen she is 5 2day nd its almost a year she is the way she is we live each day as if its the last we cherish time with her she has a baby brother he will be 10months soon they alone knw each other bcos wen they around each other we can see the love they share her face lightens up wen she hears him he wud put his little head on her face nd kissy bah her we don’t stop believing. In a miricle cos God heals the broken hearted he makes the blind 2 see he makes the lame 2 walk again nd he will do that 4 our queen we stay positive even 4 the day he takes her from us may all reading this find some answer 2 there own lives.

  7. WilliamRem


    May 6th, 2016

    I appreciate you sharing this article.Much thanks again. Really Great.

  8. Anonymous


    August 2nd, 2016

    Maybe everyone needs to stop attacking each other. I know many people who vaccinate and some who dont. I understand about both sides. From what I have gotten out of the people who do not vaccinate they are not against the idea of vaccinating. They object to the horrible additives they are made of. The people I know who do not vaccinate have actually shown me that they have done more research than people who vaccinate. I have been shown vaccine inserts because I did not believe about how bad the ingredients were. Some people who do not vaccinate are only listening to the autism thing but alot of the people are alot more educated and refuse vaccines for better reasons. It has also been stated that only 10% of vaccine side effects are reported. And I have personal experience with multiple doctors telling me tht aone side effect i have seen come bout from that vaccine was not caused by a vaccine. It was obvious that is what happened and i proved it by research. Just to find out what reaction happened was actually one of the moderate side effects that happens. Vaccines may work but why should anyone have to inject harmful things in their kid that can also do harm. Why can’t the parents join togethed and try to get the government to find effective vaccines that have better and less harmful vaccines? Everyone deserves better, stop judging and work together. I see that both parents who do and do not vaccinate love their kids the same and are truly trying to do what is best. Seriouy stop calling names and work together because everyone deserves better than this. I understand and accept arguments from both sides and I can agree with points both sides. I know that people on both sides have done thorough research and derserve to be treated respectfully. I also think it is ridiculous to say that people who do not vaccinate do not use their brains. If you who do vaccinate think about it is it truly a stupid thought to say vaccines are not safe? Have you personally asked for the inserts thT come with these vaccines? They are unsafe. Yeah it seems they have helped keep some diseases at bay but it is 100% obvious to anyone who can google an ingredient on that list that they are bad. I support both sides and I feel equally bad about terrible things happening to children from vaccines and the diseases, but everyone needs to stop treating all kids, vaccinated or not, like statistics. These kids (all of them) deserve better. Tell these pharmaceutical companies to research healthier ingredients for vaccines and do not tell me it can’t be done. It is a challenge, but isn’t that what brings innovation?

  9. School kid

    School kid

    February 10th, 2017

    I feel very sad for you and your loss.I am a school kid and we are doing a project on measles and man I literally cried when I read this sad story.Me and all my friends are in tears for this boy we all bless you and bless with the best.

  10. gabby


    November 10th, 2017

    i am very sorry i hope your family is ok now

  11. Rahul


    April 16th, 2018

    My little boy of 6 year old is currently in ICU with Fulminant version of SSPE. In 6 weeks he has gone from vibrant and bright kid to nearly unknown muted kid, under continued seizures. I’m living the pain. He was vaccinated and never had measles. I hope humanity wins over the disease and I hope Arnav (my son) succeeds the quest in some way.

    • Gary Finnegan

      Gary Finnegan

      May 3rd, 2018

      Rahul, I’m so sorry to hear this. Wishing you the very best.

    • HELEN CLARKE-Phillips

      HELEN CLARKE-Phillips

      February 17th, 2019

      Sending prayers, ,

    • Mihai


      March 27th, 2019

      Hello Rahul,
      How can your boy have SSPE if he was vaccinated?
      All my prayers and best thoughts go to Arnav!

    • Anna Miguel

      Anna Miguel

      May 24th, 2019

      Hello everyone I’m Anna from Canada, this is my testimony about the good work of a man who helped me. My life is back!! After 2 years and 3 months of marriage, my husband left me with our 2 kids. I felt like my life was about to end,and was fa

  12. andrea


    May 20th, 2018

    My baby got measles recently coukd it mean he will get sspe someday??or having measles when ur baby means u will automatically get sspe someday??sorry if my english not so fluent im frm philippines

    • Gary Finnegan

      Gary Finnegan

      July 11th, 2018

      SSPE is very rare. If your baby has recovered already, they should be fine. Check with your doctor if in doubt.

      • LynneB


        November 16th, 2018

        Gary, SSPE is very rare, but a baby having recovered from measles doesn’t automatically mean they will not have it. If you read this article properly, Max had measles as a baby, and was then fine for almost ten years.

      • Mori


        March 21st, 2019

        Unfortunately this is not true. SSPE can occur decades later and new research shows 1 in 600 people who have contracted measles will succumb to SSPE.

    • LynneB


      November 16th, 2018

      andrea, the risk of SSPE from having had measles as a baby appears to be about 1 in 500.

      It is possible. But the odds are still very much in your favour.

    • Lesley


      February 18th, 2019

      I had measles as a baby. I am partly deaf and I have bronchitis more often than normal. But I am 51 now and otherwise, unaffected. I hope you and your family are well and God be with you.

  13. Oliver Arzate

    Oliver Arzate

    June 25th, 2018

    Fantastic website. A lot of helpful information here. I am sending it to several friends ans also sharing in delicious. And of course, thanks on your sweat!

  14. Susan LaDuke

    Susan LaDuke

    August 15th, 2018

    As a nurse, living in the USA, it infuriates me that many parents continue to be irresponsible regarding their children and vaccines. This is more often the case with homeschooled children who bypass the public school laws regarding mandatory vaccinations.
    I’ve just read an article about 107 cases of measles since the start of 2018, in 21 different states. The continued lies about childhood vaccines causing autism are just absurd. Measles is an incredibly contagious disease that results in many complications. If only more parents would understand the severity of the disease and do whatever’s necessary to protect their children as well as others.
    Thank you for this important, yet sad story. This is the reality of measles.

  15. Pam Pinney

    Pam Pinney

    November 14th, 2018

    So sorry for your lost. Max sounds like he was a wonder child.
    I too, had the German measles in 1962, a year prior to the first vaccinations given in the US. I went from a happy 18 month toddler to a crying, scared-overwhelmed toddler. My mother referred to it has having depression (who knew a toddler can have depression?)
    While I have been lucky to survive the virus and the minor side effects, it was with sadness to read about another family whose toddler’s high fever cause her to have seizures and decreases mental abilities to an early death just like your son.
    Too off the medical community doesn’t take seriously the parents concerns when they say “I know there is something not right” with their child.
    I wish you and your family all the healing and peace.

  16. thomas janice

    thomas janice

    November 22nd, 2018

    My son is 13 and has been diagnosed with a rare form absence status epilepsy. His seizures show no symptoms until the seizure has lasted for hours! The only warning we had was he started acting only tired at first then gradually he started acting confused and from there for 24 hours he didn’t know what year it was, where he went to school, or even what grade he was in etc. his motors skills were perfect and he talked to everyone normal the entire time, he just couldn’t answer certain questions. The hospital kept him overnight and gave him fluids and in 24 hours he slowly started remembering and they said he was good and sent us home. We know now that he was having a constant seizure the ENTIRE TIME of his confusion! Almost 3 months later he begins having the same symptoms when I woke him up for his 2nd day of school. we are sent for an EEG, which revealed at 10 am he was actually having what the neurologist referred to as the worst EEG he had seen) we then were sent to a different children’s hospital where they observed him until 8:00pm, all this time my son passes every test, he is talking and his motor skills are completely normal! They finally begin his EEG around 9:00pm. It reveals he is still in seizure! They are blown away. Say they have never seen an absence case like his and they quickly gave him a big dose of adavan which immediately stops the seizure and he is able to regain his memory immediately. Does anyone have a child who has these same symptoms? His neuro doctor ordered a brain glucose test, but when we went for a follow up last week they said the test had been canceled and they had no idea what happened? When I asked if they were going to draw his blood and re do the test, they said that his medicine was controlling the seizures so far so they didn’t feel the need to do the test! I need advice and some direction. I searched further; visited epilepsy websites, blogs. I find info about someone having the same symptoms. I was really determined. Fortunately for me, I stumbled on a testimony of someone who had epilepsy for several years and was cured through Herbal medication. I read awesome stories of people whose condition were worse. I was not a fan of Herbal Medication, because I once believed that they have not researched it enough. But due to numerous testimonies I was more than willing to try it…. I contacted the doctor, and my son used the herbal medication. It became a miracle for my son free from rare form absence status epilepsy within 3 months. The herbal medication worked without any trace of side effects on my son…. totally free. I decided to share my son story to tell people out there, that there is a hope for those with epilepsy using herbal medicine, and anyone who suffers from seizures can be cured.
    Contact him: Dr.lawson52@ gmail. com
    Call him: (979) 341-0215

    • Jennifer


      December 19th, 2018

      Hi there
      I’m sorry to hear what you have been through and I hope you don’t mind me asking but had your son the measles vaccination?

      • Gary Finnegan

        Gary Finnegan

        January 11th, 2019

        Dear Jennifer,
        Max was too young for his vaccinations. He was infected at just six months of age.
        Kind regards,

        • Cindy


          February 28th, 2019

          Yes, but did he have vaccinations afterwards? The MMR shots?

          • Kate


            March 25th, 2019

            He had measles disease. He didn’t need the vaccine. He was immune to further cases of measles. How very sad.

    • Priss


      January 30th, 2019

      You’re horrible for creating these fake comments with fabricated stories to prey on parents desperate for answers and real help. Children are suffering, and you’re here for a profit. Profiting off the suffering of innocents. Disgusting.

      • Gary Finnegan

        Gary Finnegan

        March 27th, 2019

        This story is not fabricated (none of the content on this site is fabricated) and our Editorial Board takes exception to this false claim. This article was written by a real parent – who I have met – whose child died. Please don’t make it worse for the family. They decided to share their story here and on a website dedicated to their son to raise awareness.
        None of the comments are ‘fake’ either.

        • Mary


          April 7th, 2019

          This is very sad. However, I’m curious. Was the mother vaccinated with MMR? Vaccinated mothers pass on fewer protective antibodies to their infants than those with naturally acquired immunity. Therefore, vaccines are causing multi-generational dependence on vaccination and increasing vulnerability of infants too young to be vaccinated. Science also shows febrile childhood diseases reduce both cancer and heart disease risk. So by reducing generally mild childhood disease are we increasing the total number of immunocompromised people by increasing cancer rates? No one wants to discuss these kinds of rationale questions.

          • Chris


            April 13th, 2019

            Wow. That is so wrong.

            The first citation: please look up what the word “hypotheses” means.

            The second citation shows maternal antibodies were two months longer in mother who actually had measles. Three months plus two months is still less than six months. Which was the age the victim of the article got measles.

            Multi-generational dependence? Seriously. You would prefer little girls suffer over a week of high fever, light sensitivity, years of suppressed immunity to other pathogens and a possibility of pneumonia (1 in 20), encephalitis (1 in 1000), and death (1 in 1000) just because of less than six months of maternal antibodies?

            What should really happen: We maintain immunity to measles by having at least 95% vaccine compliance. We do not let it spread. Since it only infects human beings, it can go the way of smallpox and be eradicated from this planet. That is a much better plan.

  17. Renea


    April 11th, 2019

    I am so sorry for your loss. I cannot even begin to imagine what that would be like to go through.
    I do wonder though how the doctors can be so certain that it was the illness he had as a baby that caused seizures years later. Many environmental things can bring on seizures, including vaccines. Was anything else ever taken into serious consideration as the cause?

  18. Janine


    April 12th, 2019

    @ Priss : before you make false acquisitions Google the name Max Schoenbohm and u can see Newspaper article &&&& so pls just be quiet Thank You

  19. Jen


    April 12th, 2019

    What sort of testing was done on this boy to trace his disease to his childhood measles?

  20. Susan Meckel

    Susan Meckel

    April 17th, 2019

    The child went to a top epilepsy center, after initial treatment for seizures no longer worked. The parent said the child underwent several examinations at the epilepsy center, surely for a differential diagnosis.

    ” SSPE can be established, if the patient fulfills any three of the following five criteria:[3] (1) Typical clinical presentation with progressive intellectual deterioration with signs of myoclonus; (2) characteristic electroencephalographic (EEG) pattern; (3) elevated cerebrospinal fluid (CSF) globulin levels; (4) elevated CSF measles antibody titers; and (5) brain biopsy suggestive of measles. ”
    From: Subacute sclerosing panencephalitis: A clinical appraisal
    Annals of Indian Academy of Neurology Sujit Abajirao Jagtap, M. D. Nair, and Harsha J. Kambale1
    Oct-Dec 2013

    SSPE is an inflammatory process and uniformly progressive and fatal. None of these is true for most cases of seizure disorder.

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