Thursday, October 25, 2012

Mother's Love, Publicity and SMA

SMA is getting a lot of publicity these days, and rightly so if you consider that 1 in 40 of us carries the gene for SMA, and I think that the publicity is gaining momentum and we - the global SMA family - are spreading the word.  From the early days of Lucy and Ethel; to Tilly the ballerina and the story of her family; to the beautiful Gwendolyn and the awareness her parents are creating; to our own humble Touch & Tickle and Get Beatrice Mobile with independence as our goals, to Estella and her parent's plight to smash SMA and Avery with her tear-jerking bucket list; and now to the latest addition, George who is looking to befriend an infamous Dragon so that he too can explore this beautiful world.

Spreading our story and gaining publicity has become easier with the advent of social media: everyone can publicise their story and promote it through, for example, Facebook and Twitter, and all by the touch of a button - hit "enter" and the whole world can see your story.  Why are we spreading our stories?  To be honest, I don't think that it's about SMA or about disability in general -even in the light of the Welfare reform and the amazing spectacular that was the Paralympics - I think that it's about something far more humble and profound; 
it's about a mother's love
It's about mum's speaking out about their experiences; it's about them challenging and channelling their grief into something bigger and more positive than the whole of the disease affecting their child; it's about doing the best for their child, pushing harder against the NHS and social services, advocating for their child until their child's voice is loud enough to shout for themselves; it's about fund raising for a child worth while, a child so precious that family and friends and complete strangers will give to them instead of a bigger charity; it's about spreading awareness and sharing your experience, not wanting others to be alone; it's about a mother's deep, profound love for their child and wanting to do anything that makes their child's life better...

I haven't read the Sunday Times article yet, I haven't "met" - virtually or in real life -  George and his family or heard their story; I, however,  have a vague idea of the rebuilding of their hopes and dreams and the life that they are living now that SMA stands amongst them.  I'm very aware that I wish that I could take SMA away from their lives, cure their heart break and make it all better, but I can't and no one can...  But I can tell them that George's personality will far outgrow his disability; that life with a Snappie is wonderful; that powered mobility will offer George so much independence; that Snappie will become very much part of family life, taking on a personality of it's own; that a new "normal" will be achieved and that happiness is so very possible... it's about choosing how to life with SMA... 

and to discover more about george, go to - i will be (sometime soon...)

Monday, October 22, 2012

I loved this...

i loved this - 
it's just so true:

slide by maria kalman

can we expect everything to be ok?
i mean everything?
i mean, there are good days
bad days
days in between;

it's the rollercoaster of life
(isn't it?)
and all...

even darwin had bad days;
and he was a genius for goodness sake!

So, let's be real:
it's ok to ok
it's ok not to be ok, too
fullstop and all

Charles Darwin

Sunday, October 21, 2012

Can I ask?

a kind man approached us last week as we sat eating lunch, 

"I don't want to be rude, but can I ask what is wrong with your daughter?"

"Of course, you can; she has Spinal Muscular Atrophy and weak muscles"

"Well, you see, I had a stroke last year and when I'm having a bad day I'll think of her... I think that I have it tough...She's gorgeous and fantastic in that (Snappie)...  She's inspired me..."

"She's just E really..."

"Well, next time I'm down, I'll think of her..."

and as he walked away, stick in hand, I shouted, "take care" and my eyes welled with tears; he saw her first and foremost (but I wonder what exactly he did see in her - joy? hope? or just a young life still to be lived?) and she had inspired him.    It must be hard growing old - the years can be so unkind, robbing people of their mobility, independence and confidence, and with increasing frailty they see life carrying on around them (and often without them) and they can only look on, seeing others live their lives and wonder...

thank you, kind man for seeing E in all her gorgeousness

Thursday, October 18, 2012

From the Department of Health

I wrote to No.10 a couple of months ago and my letter was passed on to the Department of Health.   

Their reply did little to answer my letter, but this is what it did: offered sympathy "I was sorry to read that your daughter has SMA" where none was requested; offered platitudes with regards to increasing awareness of rare conditions such as SMA amongst the public and health professional, suggesting that nothing more than Google is required; and aimed to pacify with stories of a UK-wide plan for rare diseases, aiming to "improve co-ordination and co-operation of services, achieve better outcomes, strengthen research and monitoring activities, engage and empower patients and their families and carers, and raise awareness in the public and in professionals.  

I had suggested that there should be a screening programme for carriers of SMA and prenatal screening for pregnant women so that they could make informed decisions with the knowledge that they were carriers.  To this the DofH replied, and this is themost  interesting part of their reply:

"The UK National Screening Committee is currently reviewing the evidence for SMA screening against its criteria and a public consultation on the screening review will commence shortly"

This is good news... it is, I am sure...  This is what Estella's parents have been aiming for with their SMASH SMA campaign.  Pre-natal screening is of course an ethically charged and contentious issue but by opening it up to public consultation the UK NSC is looking for a consensus of opinion from those already living with SMA, whether they be a patient, a parent or a carer, and those who have the right to know if they too could be affected.  By consulting the public, they are giving people to right to choose their futures.  I look forward to hearing more and in the meantime hope to become more involved through my involvement with the Muscular Dystrophy Campaign.

Monday, October 15, 2012

One Day, One Conference - my story

This was my third Conference, but it felt strange and more real because with Eilidh there I lost my anonymity; Eilidh and Snappy were whizzing around, shouting out to the world that we were there because of disability, because our lives had been turned upside down by a diagnosis of a neuromuscular disease.  I was no longer able to lurk in the shadows.  I was there in an attempt to stand tall and confident as part of a family living with SMA.

My family was there, I felt strong but all of a sudden I felt very alone, too.  I was without my wing man and without a code word for escape.  D was playing in the crèche with E and N, far removed from the nitty gritty – and yet informative and inspirational - of the conference but still there, and yet too far away for a sideways glance or squeeze of my hand  or a “we’re ok" to reassure me that we are living this life with purpose and joy and hope.  

An hour into the morning session and as a mummy – and not a professional - it all suddenly felt too real, too personal and very raw.  Inspirational stories kept me focused but distractions flitted past…  I saw the wheelchairs, in every shape and size and colour.  I could hear a ventilator whirr in and out, in and out, in and out, supporting a life, precious and real.  PAs sat close by, on hand to assist and aid and enable, hovering and able to improve the day to day life of their loved one, relative, friend or "boss".  I could imagine a future for Eilidh and for my family, but I didn’t really know if I was ready to see the reality of living a life with a neuromuscular condition.

At the end of the day “A Life Worth Living” proved particularly hard to watch as seven men living with duchenne muscular dystrophy push ahead to lead independent lives – as independent as they are able with a disease that leaves them totally dependent on others.  I wish for E to live as independent a life as possible but the truth hurts – she will still be so dependent on others to enable her to life independently.

All things considered, however, I don’t know what the future holds for Eilidh; no one does.  We can only live in the present moment, making the most of this “wild and precious life” that we have been given, encouraged and inspired by others, and fuelled by the love of family and friends.  By taking each day at face value we will move forward to an uncertain future and the challenges it may bring.  I know that we will learn along the way, growing as a family, with love and hope and faith as our foundations, and we will live our future, challenges and all.


This was the emotional response to my One Day, One Conference, open and honest and real.  We can all stand tall and be strong and learn, but it is often our fears that bring the greatest opportunity for growth.

 You can you read the other Conference posts here:

Saturday, October 13, 2012

One Day, One Conference - the inspiration

So we've had the facts and figures and now to what inspired and humbled me about the Muscular Dystrophy Campaign Scottish Conference.

Firstly Hayleigh Barclay:  Hayleigh is a leader, blazing a trail and campaigning for what is just.  She is a Trailblazer - Trailblazers is a network of over 400 young disabled people working to highlight and address issues that are important to them, fighting the injustices that they encounter, breaking down barriers that prevent young disabled people from living a full life,  and enabling others to live a brighter life through friendship, work experience and so much more.

She talked about the report which was published earlier this year which highlights the awful truth of bullying directed towards young disabled people.  Bullying is something I worry about, not for now but for the future; young children look and behave inquisitively and innocently, but as they grow older that innocence can be lost and children can be unkind -even when they don't mean to be - and I really don't know what happens to us as adults that we become so judgemental and full of hatred.

Of those Trailblazers surveyed: 

8 in 10 have experienced harassment, humiliation or embarrassment by a person’s attitude to them being a disabled person

50 percent say they have been intimidated because they are a disabled person

two out of three have been taunted or verbally abused because they are disabled

These figures moved me to tears, that such hatred causing such pain can be part of every day life, causing misery to those who deserve better.  Trailblazers have responded positively and have given hope to many by making simple recommendations, helping those suffering from bullying now and in the future.  The recommendations can be found in the report but the one that I know will make the biggest difference, that has the potential to change people's lives,  is a hotline, a listening ear for those being bullied, a safe and confidential support system for those in need.  Simple perhaps, but life changing.

Hayleigh has also launched a campaign Plane Fair looking at Air Travel and the problems that wheelchair using travellers are encountering - tales of damaged wheelchairs, policies that means power wheelchairs are unable to fly, difficulties in transferring between chair and seat.  Again I worry about travelling as a family with snappie and have reluctantly concluded that we will holiday with the E-Team van in and around the UK, maybe venturing to Europe by rail or ferry, but not by plane. Yes, it's partially selfish, but I wholly support Hayleigh's campaign for hopefully it will open the skies to those in powerchairs, enabling the world to become a smaller place. 

At the end of the conference a special viewing of a film was held.  An idea born from a man living an unexpected life, living beyond the realms of what was once thought possible for a boy diagnosed with duchenne muscular dystrophy at the age of three:

"you suddenly get a crazy idea. You are going to make a film: a film about some remarkable Duchenners who are all living productive, creative and fulfilling lives. You want to inspire a younger Duchenne generation and their parents by showing them just what can be achieved even under this most crippling of disabilities."  

I cannot possibly do Jon's story justice so please check out the website A Life Worth Living and be inspired, be humbled and be proud, because I was: these men are living their "wild and precious" lives and that's just amazing!

"Never give in.  Never give up."

 - another of my take home messages from this one day, one conference which was  inspirational but at times challenging too, but that's life in it's entirety, isnt' it?

Take a look at the other posts from the Conference:
One Day, One Conference -facts and figures
One Day, One Conference - my day

Friday, October 12, 2012

One Day, One Conference - facts and figures

Last weekend, for the first time as a family, we attended the Scottish Muscular Dystrophy Campaign Conference at the Beardmore Hotel in Glasgow.  This was my third conference and this year I felt more involved and more able to listen, ready to stand tall and speak out because time is a great healer

The MDC is very much a grassroots organisation, depending on the front line workers - the fundraisers, the donors, the volunteers and the supporters - and it is with their help that the MDC is leading the fight against muscular disease.  It is the hope of the Campaign and this was voiced by the CEO Robert Meadowcroft that it becomes stronger and more effective, building on the foundations of the front line workers, improving care and support for families affected by and living with neuromuscular conditions.  Research is ongoing and the MDC is helping realise the potential of research but at the same time reminding us that we need to proceed cautiously because with research can come the false hope of totally curative treatments: while a cure may be found one day, research into many neuromuscular conditions remains in its early stages, focusing on the basic genetics of the disease, the science behind the conditions and potentially life altering - but not curative - treatments.

Jackie Baillie, a member of the Scottish Parliament, Chair of the Cross Party Group on Muscular Dystrophy, and a great advocate for independence for disabled people, took to the floor - and took out the IT system, too! - rallying us to "keep the pressure up", through "nagging" and with tenacity - on parliament and on the government, ensuring that we guard the advantage already gained through hard work and research, especially with regards to the three full time care advisers promised for Scotland.  The 2 neuromuscular care advisers currently working in Scotland have huge work loads, covering a vast geographic area, and  play integral roles in those living with neuromuscular conditions, enabling them to access the care that they need and deserve.  Unfortunately, despite advertising the role in the north of the country, there has been no new adviser appointed and the people in the north of Scotland are losing out.  Personally, I don't know where we would be without our care adviser; she has been a real lifeline and I know that having improved access to neuromuscular care advisers would change the lives for many of those living with neuromuscular conditions.

Jackie Baillie went on to speak of financial restraints and the proposed NHS cuts across Scotland amounting to approximately £319 million; this equates to 10,000 staff and,  to date, 5500 NHS staff  have already been payed off, 2500 of those being nurses which, obviously has a huge, direct impact on patient care and the ability to deliver care standards.  The nurses are the back bone of the NHS, essential to its day to day running and survival and we seem to have all of our priorities wrong: free prescriptions for one and all costs Scotland £61 million a year (and is likely to escalate) - this money, and I wholeheartedly agree, could be spent better, for example on 2000 nurses who would provide care and support, improving the lives of patients who are currently - surely - feeling the brunt end of dilutional rationing.

Gary Kernahan, the head of volunteer fundraising, told us of the year past and of some of the fundraising that was done for the MDC.  100 daredevils (crazy people!) - including our very own care adviser! - took to the sky on the 29th February to fundraise and he shared the story of  Hannah and her family who raised over £3000 in memory of her brother Adam who died of duchenne muscular dystrophy.

"Make Today Count": if you are keen to skydive, and would like to be part of "Team 100", put the 1st March 2013 into your diary and register to "Make Today Count" - and all for the bargain price of £29... do you dare?  It's all for a great cause!

One thing that Gary said has really struck home and it's amazingly simple:
"If every family affected by muscular dystrophy or a related neuromuscular condition raised £29.24 this year we would meet the fundraising requirement set for Scotland’s contribution to fund our research work and support services."  

WOW!  Isn't that amazing - £29.24 is really nothing, even in these times of austerity, and could make such a difference to someone's life - will you take up the £29.24 challenge and fundraise for the MDC?

And to finish, as Robert Meadowcroft said, "We are on our way - together!"

Together as a campaign, as an organisation, our voice is stronger, shouts louder and reaches further, echoing into the lives of those regardless of whether they are living with neuromuscular disease or not.  Our voice is effective and does not go unheard.  The MDC is growing and maturing over the years, investing in the people living with neuromuscular disease, supporting the families affected, raising awareness of life altering diseases, funding invaluable research, trailblazing the way towards a better future and providing advocacy for those who need to be heard; I am proud - and humbled - to be part of the Muscular Dystrophy Campaign.

To Follow:
One Day, One Conference - the inspiration
One Day, One Conference - my day