Monday, 29 February 2016

Supporting Meningitis B Vaccine

Below is a rather husky interview with BBC Radio Shropshire - thankfully they were clever enough to edit out all of the coughing! 

I shared Adam's story of infection with Meningitis and lending my support for the petition asking the government to extend the Meningitis B vaccine to all children under eleven.

video


If you haven't yet signed the petition calling on the UK government to inform women of the risks of Group b Strep and to test them for it, then please do so here and then share widely:  UK Parliament Petition  There is also a petition on Change.org.

If you haven't yet signed the petition calling on the government to extend the Meningitis B vaccination programme to all children, then please do so here:  UK Parliament Petition

If you know any pregnant women, or are pregnant yourself, then please visit the Group b Strep Support website for information on this potentially devastating, but preventable infection:  Group B Strep Support

Saturday, 27 February 2016

I Lost My Child Today

Since Adam's illness, I have gradually joined a number of Facebook groups for families who have been affected by meningitis.  Some children have survived, tragically, others have died as a result.  Quite understandably, this grief remains incredibly raw for those families and I feel the greatest compassion for them - when I came close to the precipice as doctors quietly said that my son was likely to die, I simply could not comprehend the pain that overwhelmed me.  Recently, I came across this poem; it had been posted in one of these groups by the family of a child who died after a devastating battle with Meningitis, and while the poem was written in different circumstances, the grief expressed is universal: 

I lost my child today. 

People came to weep and cry 
As I just sat and stared, dry eyed. 
They struggled to find words to say 
To try and make the pain go away. 
I walked the floor in disbelief. I lost my child today.

I lost my child last month.
Most of the people went away.
Some still call and some still stay.
I wait to wake up from this dream
This can't be real--I want to scream.
Yet everything is locked inside,
God, help me, I want to die. I lost my child last month.


I lost my child last year.
Now people, who had come, have gone.
I sit and struggle all day long,
to bear the pain so deep inside.
And now my friends just question, Why?
Why does this mother not move on?
Just sits and sings the same old song.
Good heavens, it has been so long. I lost my child last year.


Time has not moved on for me.
The numbness it has disappeared.
My eyes have now cried many tears.
I see the look upon your face,
"She must move on and leave this place."
Yet I am trapped right here in time.
The songs the same, as is the rhyme,
I lost my child......toda­­y.


No parent should ever have to bury a child, in any circumstances, and yet so many do.  There are many tragedies in this world that we find almost impossible to prevent, but increasingly, through advances in medical science, it is possible to battle a number of different strains of Meningitis - instances of Group b Strep Meningitis can be significantly reduced through testing pregnant mothers for the bacteria and then offering antibiotics at birth; infections with Meningitis B can now be significantly reduced through vaccination.  This shouldn't be an issue for political battles and long-term debates, for many it's a matter of life and death.

If you haven't yet signed the petition calling on the UK government to inform women of the risks of Group b Strep and to test them for it, then please do so here and then share widely:  UK Parliament Petition  There is also a petition on Change.org.

If you haven't yet signed the petition calling on the government to extend the Meningitis B vaccination programme to all children, then please do so here:  UK Parliament Petition

If you know any pregnant women, or are pregnant yourself, then please visit the Group b Strep Support website for information on this potentially devastating, but preventable infection:  Group B Strep Support

Poem written by Netta Wilson whose daughter, Caprice Cara Wilson, died in a car accident in 1994.  Netta died in 2011 and this poem was published in "The Newsletter of the Compassionate Friends" in 2001.

Friday, 26 February 2016

A Record Breaking Petition

As the petition asking the government to offer the Meningitis B vaccine to all children reaches 807,998 signatures, there has been confirmation that the issue will be debated in the House of Commons.   A date for this has yet to be announced.

Meanwhile, the media continue to pick up the story and, following last week's article in the Shropshire Star, it has now also been printed in the Telford Journal, Bridgnorth Journal and BBC Radio Shropshire have asked me for an interview this Sunday.

So, to reiterate, the Meningitis B vaccine would not have protected Adam from contracting Group b Strep Meningitis at birth, as these two varieties of Meningitis are triggered by different bacteria.

However, Meningitis in any form is a deadly disease that can kill and, for survivors, cause lifelong disabilities.  So where a vaccine exists to prevent infections, then I believe it should be made available to all of those known to be at greatest risk.  As I understand it, children under the age of one are at greatest risk, children under five next, then children under eleven and then teenagers under eighteen.

For this reason, I think it is an excellent step to roll out the vaccine against Meningitis B to children under the age of one, but this programme now needs to be expanded to all children.

As my son, Adam, is four years old, he is in the group of children at second greatest risk of Meningitis infections and, having already nearly lost his life to Group b Strep Meningitis, any strain of this deadly infection remains my worst fear.   However, if I wish to vaccinate Adam against Meningitis B, a private dose would cost in the region of £300, even if I could access it and, with global supplies of Bexsero critically low, this becomes nearly impossible for the foreseeable future.

Anything that can be done to minimise the risk and even prevent the possibility of my son - or any child - being infected by Meningitis, should be done.  We may not yet be able to vaccinate against Group b Strep Meningitis, but we can vaccinate against Meningitis B - so we must.

Thursday, 18 February 2016

Have You Signed the Meningitis B Petition?

At the moment, there is a petition on the UK Government website calling for the Meningitis B Vaccine to be extended to ALL children under age 11, instead of just being offered to babies.  As I write this post, the petition has attracted 497,881 signatures which means that it will be debated in the House of Commons (any petition over 100,000 signatures falls into this category).  I am one of the people who has signed this petition and so I am delighted it has gained so much support, and I will be quoted in the Shropshire Star as saying so.  

As the mother of a child who has been infected with meningitis and who is disabled for life as a result, I would not wish this hell on any other person - parent or child.  At present, because he is over the age threshold, if I want Adam vaccinated against Meningitis B, then I would have to pay over £100 for the two injections that complete this vaccination.  If paying this amount means protecting Adam, then I am willing to do this, but if the vaccine is available free of charge to some children in the UK, then it should be available to all children.

However, I also think it is important to say that this vaccine would NOT have protected Adam against the Group b Strep Meningitis that he contracted at birth - there are a number of different bacteria that can cause meningitis but GBS Meningitis and Meningitis B are caused by different bacteria.  While research is ongoing into the development of a vaccine against Group b Strep, such a vaccine is at least 10-15 years away.  

But, regardless of which bacteria actually triggers the infection, meningitis is an incredibly serious infection of the lining of the brain that can very easily be fatal, and often causes life-long disabilities even in those who do survive.  There are approximately 3,200 cases of meningitis in the UK each year and anything that can be done to prevent these horrible infections, and to increase immunity to them, should be done.  With a vaccine now readily available, all children should be given access to it through the NHS.

If you would like more information on the difference between Group b Strep Meningitis and Meningitis B, then please visit the GBSS website for a clear explanation: Strep B versus Meningitis B

If you would like to add your signature to the Meningitis B petition, you can do so here:  "Give the Meningitis B vaccine to ALL children, not just newborn babies."

And, if you would like to add your signature to the latest petition calling for testing and prevention of Group b Strep in the UK, then please visit here: Change.org Petition and UK Parliament Petition

Wednesday, 17 February 2016

The New Normal

Nearly five years later, I lhink that we've pretty much adjusted to "the new normal"  - it remains very hard, don't make the mistake of thinking otherwise, but it's no longer shocking to us...it just...is what it is.  But sometimes, I see our "normal" through the eyes of others and remember just how much we have adjusted to a new way of living.

Yesterday morning, I took Adam to Asda.  We had run out of Dumbles and I needed to restock. These days he bites the teat off them so goes through them pretty quickly, but while we've managed to largely restrict them to bedtimes, we haven't succeeded in getting him off them completely.    So, as usual, we parked in disabled parking and I clipped Adam onto his safety harness, allowing him the freedom to walk while knowing he can't take off or put himself into harm's way.  As we walked into the shop, Adam noticed his favourite Big Ride (the travelator) and as I dared to move into an aisle instead of instantly heading for the travelator, Adam arched his back, screeched and prepared to drop to the floor.  Reacting quickly, I crouched down to catch his eyes, saying and signing, "Adam, would you like to go on the Big Ride?"  The scream stopped mid-breath and he silently tugged me towards it.  

As usual, Adam put himself as far away as his harness and lead would allow, leaving me to shift my weight backwards to compensate for being tugged forwards while tilted backwards by the escalator.  I ignored the odd looks we received, not caring if my son looked remarkably like a dog on a lead, I knew he was enjoying himself.  But at the top, as we didn't actually need anything upstairs, I crouched down again asking if he wanted to go back down or to explore.  Adam tugged me down the centre aisle and we wandered for a while before he discovered the balcony.  Pressing his nose against the plexiglass, Adam peered down to the ground floor, absolutely focused and silent.  We watched together for a while as I was left to guess what had caught his attention so completely, and then I asked if he would like to go on the Big Ride again.  We were off for the downward trip but, as expected, when we arrived at the bottom and I tried to go down the fruit aisle, Adam immediately dropped to the floor, screaming and thrashing.  I waited, talking him through it and encouraging him to come help me find something special. Eventually, I managed to get my son to his feet.

As I searched for the baby aisle, I knew Adam was on a very fine thread - he was cooperating...for the moment...and only because I was keeping up a constant stream of encouragement - "Adam, can you help Mummy?  Can you help Mummy find something special?  Adam do big helping!"  Once again, I ignored the slightly confused looks others were giving to me when they saw that I wasn't accompanied by a tiny toddler but by a strapping four year old, who is the size of an eight year old.  "Why is she speaking to him like a baby?  He's a little old to be on reigns isn't he? Talk about an overprotective mother..."

Eventually, we arrived in the baby aisle and chose four boxes, each containing two Dumbles.  At first, Adam looked like all of his Christmases had come at once...until he realised he couldn't immediately have them.  Once again, I was crouching down explaining that we had to go pay for them before he could have one and keeping up a constant litany of "Now pay, Next Dumbles.  Now pay, Next Dumbles."  Managing to get Adam to the nearest till, I quickly scanned the Dumbles and dropped them onto the scale - while operating Octopus Hands to keep him away from them.  But just as I was nearly home-free, I realised the "2 for £6" deal hadn't come off the price so with a sinking heart, I pressed the "help" button and tried to keep Adam away from them (once opened, consider them bought).  The smallest things can be a turning point in our world...

The friendly member of staff came over to help but immediately scooped up all of the boxes of Dumbles and marched back up the aisle to check the price.  If only she had told me what she intended, then I could have managed the situation but she didn't think to - why would she?  Instantly, Adam's back arched and he began to scream, and scream and scream.  He dropped to the ground, thrashing on the floor, his head only narrowly missed by a passing trolley.  This time, the looks of shock were blatant, the thoughts of people might as well have been written in big speech bubbles over their heads:  "That child is out of control!  Why is he behaving that way?  Why is she tolerating it?"  

I crouched down to Adam's level, pulling him back out of the way of the trolleys, trying to soothe and explain that Dumbles would be back, they hadn't gone forever.  Dumbles were coming back.  Adam's response was to scream, slap and punch me.  The looks of shock became looks of horror.  "What on earth is WRONG with that child?!  He's much too old to be behaving that way! A good smack is what he needs!"  I spoke, signed and tried to soothe.  When that failed, making sure he was out of harm's way, I left Adam to scream and kick on the floor - wearing his harness and attached to the strap around my waist, I knew he couldn't get away.   He was safe enough and I was close by in case he started banging his head on the floor.

After what seemed an age, the member of staff returned carrying three boxes of the "right" Dumbles and one box in another shape and size but that were the same price.  I explained that all of the boxes had to be EXACTLY the same brand and variety, colour didn't matter but brand and shape did.  She looked at me as though I had two heads and said, "Does it really matter?!"   "Yes, it does matter.  When you have a child with autism, it matters.  You learn not to negotiate because you can't negotiate."  While remaining polite, the incredulous look on her face told me she thought I was being more than a bit high maintenance.  Thankfully, her supervisor took one look at Adam (still screaming on the floor) and ran to get a box of the correct variety, telling her to ring up four boxes and just let him have one - we would sort out payment in a minute.  

Fumbling for a box, I opened it and popped a Dumbles into Adam's screaming mouth.  Silence fell instantly, the tantrum ended as quickly as it had begun.  I made a point of not meeting anyone else's eye, sometimes it's just not worth it as I may regret what I would say. Transaction finally complete, I guided Adam out of the shop and back to the car.  As we walked towards the disabled parking space, an elderly man with a walking stick and parked beside us, shot me a furious glare.  I'm used to this, it's the glare that says: "Both of them can clearly walk, why is she in a disabled parking space?  Doesn't she know they're for blue badge holders only?!"  It was another one of those silent speech bubbles.   

I ignored him as Adam shouted "ONE! TWO!" and opened two car doors before climbing into his special needs carseat announcing, "Purple, purple!  Purple, purple!"  I gave Adam his two purple toy dinosaurs and strapped him in as the elderly man continued to glare at us.  Still ignoring him, I fastened my own seatbelt and slowly drove away, thinking about "normal" and how different normal appears to us and to those around us.  

It was just an ordinary snippet, out of an ordinary day.  An hour's trip to buy six Dumbles.  Completely normal.