‘Laura and Lynn’s story. Living in the shadow of their smiles.’
It has been too long since my last post.
For many reasons the time didn’t feel right to write.
Today I got a nudge.
Tell them about Jane McKenna’s wonderful book.
I have been taken right back it how Victoria’s piece in it, came to be written.
The documentary ‘No Time to Die’ was happening. I wanted to paint them a picture, in words. A piece so that they understood Victoria’s story, as she was gone and they couldn’t see her before them anymore. I wrote a short piece called, ‘Painting a Picture.’ It got lost in the email world. The director found it at exactly the right time and used it for as the backdrop for Victoria’s slot on the documentary.
But I could still see a book in my head. I was convinced of it. Sure of it. Had everyone’s heart annoyed with it. Got publishers to watch the documentary. Thought of lots of pitches for a charity book. Cook books, memory books? But no book happened. I was surprised – why not?
Then I met Jane McKenna again. I suggested a book for LauraLynn. She mentioned she was writing one. I thought ‘of course that’s the book’. But no – the time wasn’t right.
The book idea still wouldn’t go away. (Some people will know how plagued I was with ‘the book’ notion!)
I had started to write down Victoria’s story. For therapy, to remember.
Up pops the idea – A children’s story book perhaps? Then I met Benji Bennet. His son Adam has wonderful books in his memory. Magically, proceeds from some of Benji’s and Adam’s book go to LauraLynn. So that was the book maybe?
Benji suggested I blog. So I did. Ta – da here it is!
In the meantime Jane McKenna found a publisher and has her book was almost finished. She asks me if Victoria could be in her book?
Sob. Sob. Of course. Thank you so very much. And…. Aha! So this is the book I have had feelings about for so long?
For Victoria to be with Laura and Lynn (and with all her special LauraLynn pals) in Jane’s book – is heart-melting. An honour. A privilege. Jane and Brendan’s strength is amazing. Their friendship means the world and their girls’ legacy is priceless.
There was no other piece I could have given to Jane; but the first one that started all of this – ‘Painting a Picture.’ There are many other extracts and memories from others in the book. It gives me great peace to feel the pages keep all these memories safely tucked together.
What it the title of Jane’s wonderful book?
‘Laura and Lynn’s story. Living in the shadow of their smiles.’
What a glorious title. Here it is – Laura and Lynn’s magic lives on.
Thank you Jane and Brendan.
We miss and love you always Victoria. XX
It has been a long time, since there was a blog post
So what’s up?
Victoria has ensured her story and journey is going on the European Palliative Care website. I will post about it when it happens and how you find the website. As palliative care is new in many respects, (especially children’s palliative care), this is quite BIG news for kiddies. Her message about children needing a safe haven is really going across the EU.
www.cypph.com took her with them to Europe.
Questions have been asked already;
- Like how did Victoria get fulltime care in a hospice so far from her home? Good question.
- Why is home care pushed for all children?
- What happens if children cannot access respite?
- Why is there only one children’s hospice in Ireland?
So, if sharing Victoria highlights these issues, then well – it’s magic.
- Our Children’s Voice is continuing to meet with the HSE officials in Donegal. Positive but not magical just yet.
- I have heard recently accounts of parents being allowed to stay in Dublin hospitals with their dying children. If they wish to stay (and many have), they can do so. I doubt this is policy but I still feel this is a minor victory for Victoria’s work. Somewhere people have listened that not all children can have a safe death at home. Why they do not go to LauraLynn is another concern.
- There is to be a workshop in Donegal for parents of children with life limited conditions. I’ve pushed for it and Donegal have answered and wonderful professionals are stepping up to the plate and organising it. More on this to follow. It is in October. More magic.
Please stay with Victoria even though butterflies have been scarce this year, she is loved and missed always.
This past wee while, I am reminded of Victoria’s large sigh. She would sigh when the stupidness of the situation, would become plain, to even her. A large wise sigh.
I found myself seeing it quite a bit lately, in my mind. I asked Victoria for guidance quite a bit too.
Like children’s palliative care in Ireland, patient education and involvement in medical Research and Development is new. So… I spend a great deal of time – Confused.
What’s been goin’ on?
Conferences and workshops on patient involvement.
In the photo – Directors of National and EU patient organisation groups. Eibhlin Munroe and Jan Geisler, with the piece in the Irish Times.
Why am I sighing?
There is an overwhelming need from patient organisations to be accepted and included in research that affects them (and others) and a seemingly reluctant, but needed partnership, coming from industry and academia.
But … they all find it hard to listen.
I spoke about the minefield for patients on the way to the promised land of involvement. Dodging egos, politics, others who may trample you. It is exceptionally difficult to break the code of silence that surrounds medical R&D. There is distrust on both sides.
Industry seems to think that patients will be awkward and a burden. They find it hard to hide it, but they try.
Patients assume, that industry will want to use patients and not respect us. They find it hard to hide it, but they try.
Students in EUPATI and patient organisations have a lot to contend with. The study, and there’s a responsibility to be good representatives for their fellow patients. They must remain strong, voluntary and awake in the midst of large brains, industry’s money and terminology.
It’s fecking tiring. Slow bastarding slow, it all seems. Surely patients are the core of the medical system. Why are they not the most important people in the equation?
Everyone in the chain needs a patient. And a patient needs frigging patience.
Victoria had great patience for a small baby. I heard her sigh quite a bit of late. Stay close princess.
Victoria made sure she was involved in this piece. I could explain all the to and fros with photographs, journalists and EUPATI…but all I will say is…… Victoria made sure her voice was heard and no one else’s. Her message is worded by me and Sylvia Thompson (of the Irish Times), but her message is always louder than us all.
Thank you for sticking close by princess. x
Where do I begin?
….. to write about 48 people together in Barcelona learning about medical research?
Like our 4 days of lectures, I could pour reams of facts and figures at you. Instead I will be brief.
EUPATI brought us together. This is the link to them. Please like their page; https://www.facebook.com/eupati.eu
What was it like?
Empowerment and enthusiasm: Everyone was there for every lecture for the whole 4 days. Despite the sun, sea and … whatever else. Amazing!
United: We all grew to feel untied in our endeavours despite the huge range of diseases and conditions we represented.
Pals: We made pals from all across Europe!
Achievable: it feels achievable now, that I can be involved somehow, in National and International Research.
Time: Everything takes time and patience. There is a tremendous amount to learn and sift through.
Inspiring: The other students were the most amazing people. We meet again in September. I feel we will become even closer and more inspired, from the work these people are doing, in their own countries.
Why did I go?
There needs to be a voice for children. A voice for children and babies with rare, terminal conditions. An Irish voice from rural Ireland.
In research and development things need to be profitable for companies. Therefore common adult diseases come first on agendas. Childhood conditions are down the list. It is difficult to research them and bring up such topics. Rare, terminal diseases that affect small babies, that are complex, well… imagine where they are?!! On the very bottom of piles of conditions that are easier to research and will bring greater returns.
I also realised getting a drug manufactured is hard enough, then you must get it to patients. Duchenne’s is one condition where drugs are being stalled http://www.actionduchenne.org/campaign/campaigning-for-safe-and-effective-treatments/
and also this clip about two boys called Sam, https://www.youtube.com/watch?v=-j_z8BQirwI&feature=share says it all
Victoria was very close to me while I was away. I felt exceptionally humbled that she led me there. Although we are supposed to think of the big picture (not just our own cause). I cannot think of anything greater, than representing Victoria and trying to fight to end the awful condition that took her away.
Right now I am waiting Victoria. I’m letting you make the magic happen. xxx
We love and miss you always.
Barcelona March 2015.
Victoria’s story is going to Europe, Spain, where she will be an ambassador for children’s palliative care and rare disease. (and herself of course!)
EUPATI – European Patient Academy for Therapeutic Innovation. (Big mouthful. I know!) is helping her get her message to the EU.
This organisation is gathering all of their students in Barcelona for a four day conference on medical research. I am one of their 5 Irish students. There are approx. 50 students from all over Europe attending.
It is going to be a full, four days of conferences! (No sun time.)
EUPATI are also forming National Platforms where patient representatives can have a voice, in medicine and research development. They have asked me to join their National Platform. EUPATI are funded by pharmaceutical companies, academia, governments etc. It is not a charity.
Their newsletter kindly welcomed me; “We have some new voices joining us across Europe, and I’d like to particularly welcome our new Austrian NLT to EUPATI! We also have Sharon Thompson joining us in Ireland, Witold Michalek joining us in Poland.”
This is new – so I am a bit at sea, without a paddle, sail or engine. Victoria might know what she is doing though? My interests will be in paediatric palliative care and in rare disease research and development.
We love and miss you always Victoria. x
Today is Rare Disease Day 2015. Victoria developed a rare, terminal condition (for those, who are new to our blog).
Victoria’s life story is going cross-border, to Enniskillen, on Tuesday 3rd March, for the
Joint NI Rare Disease Day 2015 and Inaugural World Birth Defects Day Conference http://www.nirdp.org.uk/
They’ve kindly asked me to speak about Victoria. It is a cross-border event. This ties in nicely, with Our Children’s Voice’s wish, to develop cross-border links.
I love the title of the day, ‘Day by Day, Hand in Hand.’
I am hoping that Victoria’s life shows that theme; how we take and took things, day by day and our hands were held, all the way.
This is the official video for Rare Disease day. It is lovely.
love you baby boo. xx