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. Alli

    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.

    http://www.jw.org/en/publications/magazines/wp20140101/#?insight%5Bsearch_id%5D=f63346c8-2f06-4e23-a713-a25c72da5f68&insight%5Bsearch_result_index%5D=0

  2. k

    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.

  3. Anonymous

    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

    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

    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

    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

    WilliamRem

    May 6th, 2016

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

  8. Anonymous

    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.

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