I was invited to Letterkenny to be involved in a get together for children suffering from rare disease. What a privilege to be part of such a special morning.
Danny and Amanda O’Carroll (aka Buster and Betty from Mrs Brown’s Boys) met with families affected by mitochondrial disorders in Letterkenny today, 1st December. Danny and Amanda hope their involvement will highlight conditions like mitochondrial disease and help families get much needed services in the North West.
Mothers of children affected by this rare, life-limiting illness explained to Danny and Amanda how services are non-existent for their children in Donegal. Nationally life-limited children have no proper supports. Mitochondrial disease affects every cell in the body. Children with such conditions live shorter lives with very complex needs.
‘We love our children and must fight for everything to improve their quality of life,’ said Aishling Nibbs Oran’s mother.
Organiser of this first get together Gina Grant (mother to Francis) said, ‘As a group, we hope events like today highlight mitochondrial disease. We will link families in Donegal with information and friendship. Together we will push for an understanding of rare, complex conditions and secure better services to make our children’s lives the best that they can be. Anyone affected please feel free to get in touch with me – email@example.com.’
For further information on some other help available nationally: www.cypph.com
I missed you an awful lot today Victoria. xx
EUPATI is helping Victoria get a voice in Europe.
While I sat in Crumlin, with Victoria, I naively e-mailed drug companies in the hope that I would prompt them into researching conditions like hers. I’ve discovered that it definitely doesn’t work that way. One lone voice or email will not change how the experts research drugs or cures.
I harp on about being interested in Research, Development & Education about Rare Disease. I tweet about it all the time @Victoriabttrfly. So I got an email from a very special lady Pat Roberts (from Save Babies UK). Her encouragement led me to apply for an online course with EUPATI. The course is about medical research and development.
Who or what the ‘eck is EUPATI?
It’s the European Patients’ Academy on Therapeutic Innovation. (Mouthful I know).
The reason I like EUPATI is they use the term ‘Patient-centred’ a great deal. EUPATI as an organisation seems big and includes universities, industries, patient organisations and non-profit organisations from all over Europe.
What do they do?
They want to educate ordinary Joes/Josephines about medical research and provide information to patient reps about trials, the development of medicines, how patients can be consulted and a valued part of the process.
What is medical research and development?
It’s about how experts decide on what drugs to make and market. How they do research to find drugs and cures (and much more.)
How did I get on the course?
I applied. Sent off an application and Motivation letter and waited on Victoria magic. It worked. 300 people had applied. 53 people were chosen. Only 5 were chosen from Ireland. I was one of them. Yipee!
How am I finding the course?
As it’s online mostly (with two face to face sessions) it’s hard to tell yet. It’s massively more complicated than I thought. The medical jargon would ‘melt your head’. It’s all explained, but even the explanations should come with explanations. But, I’m enjoying it.
What’s good about it?
- Networking with the other passionate patients or patients’ reps.
- Learning how research happens and how complex it is.
- It’s online, so I can do it anytime.
- There’s a feeling change is coming for patients. Patient power is growing. (Slowly)
- There is an interest in taking patients’ perspectives on board.
- The other students on the course are hugely inspiring with lots of knowledge.
- Sharing posts and finding out how different medical systems are in various countries.
- This course links people throughout Europe from a patient’s perspective.
Where does it lead? – I have absolutely no idea. I hope a little angel (we all know), has a plan – otherwise Mummy is going to be very fed up of molecules and studying.
Miss and love you always Victoria. XXxx
November 2014. Where to begin? I mentioned in one of my last posts there were things happening, but as usual, I had no idea where they would lead. The @AIIHPC – (All Ireland Institute for Hospice and Palliative Care) kindly invited me onto their website steering committee. It was to make a hub of information for children and young people, in relation to palliative care. www.cypph.com – here it is. (#pallhub) I also wrote two leaflets for them. Making Memories: http://www.cypph.com/palliative-journey/making-memories Things We Wish We Knew: http://www.cypph.com/palliative-journey/downloads The Redcastle Hotel kindly put me in touch with a graphic designer (Twinbrush) who worked for free to help me lay out the leaflets. It was an honour to be included in the committee, as very knowledgeable, trained people were involved. (outreach nurses, Jack & Jill, LauraLynn etc). Karen and Gareth the co-ordinators and makers of the site were so kind and supportive. The whole project grew and suddenly it was the launch date. 29th Oct 2014. Something told me to be prepared for Victoria magic but nothing seemed to be happening. It came to the night before and I was – bemused. There was no fuss. ‘Fair enough,’ I thought. But ….Then Ronan from Cavanagh Communications rang and the magic began. Morning Ireland interview came first on Wednesday morning. RTE Morning Ireland: http://www.rte.ie/radio/utils/radioplayer/rteradioweb.html#!rii=9%3A20672520%3A0%3A%3A Victoria hit the RTE studios. First live radio, then TV News. I hadn’t time to think or worry and just told it – like it is. Like it was for Victoria. RTE TV News piece – scroll down and it’s under features (was on 1pm and Six one live TV News also): http://www.rte.ie/news/ TV3 Report : http://www.tv3.ie/news_sub_page.php?video_id=86315&locID=1.2.883 The launch was at the College of Surgeons the same afternoon. Miriam O’Callaghan kindly came to help with promotion. The Minister for Health, wasn’t coming to our launch but I managed to tell him about the website launch. (I kinda ran into him on purpose). Jane McKenna, LauraLynn founder and Laura and Lynn’s mum came with me to the launch. I met Caoimhe and her parents Siobhan and Martin. We talked, stood for photos and smiled. All the while I was thinking, ‘This was all unnatural and will it all matter, to anyone other than us, in the morning?’ The launch itself was brilliant. Honoured, I spoke about what it was like to have no answers or options. How hopefully the site would make differences for families. This website http://www.cypph.com is just another step. There does seem to be a real interest in children’s palliative care. After another two, live, radio interviews and a few articles in local media, we reached Friday. I fell in a heap of emotion. Highland radio – http://www.highlandradio.com/show/the-shaun-doherty-show/ Ocean FM Sligo; https://soundcloud.com/oceanfm/sharon-thompson-on-ocean-fm
Wonderful informative blog that is also light hearted at times with emotion peeking through. For anyone to read but especially those with skin conditions. Well written blog that will open you to how it feels to have psoriasis.
Originally posted on Lost in my skin:
Do you ever wonder what people ‘see’ when they look at you? I do. Every so often I hear that question in my mind. What do they see when they look at me? Is it my hair? Crazy, dark brown and lots of it, highlighted with caramel tones. A hint of natural curl showing on a good day or a mass of frizz when time is scarce. If not my hair, maybe they are drawn to my eyes; big and blue; with a little brown speck in one and some mischief in the other?
Or do they notice and wonder how I got the scar over my right eye? Do they spot the tell tale sign of a piercing over my left eye, or are they drawn to the deep round scar beside my mouth, that stole the place of a Cindy Crawford mole?
Maybe they catch a glimpse of…
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Ebola has got me thinking.
Many people are thinking about it, many people are dying. Horrendous deaths on a large scale. Children are being orphaned and are suffering. Adults are infecting each other and health care workers. It’s spreading.
Scary shit. No doubt about it.
So of course the world starts to ask questions and run for medicines. Everyone starts to talk about it, things get done (however well) and a cure is searched for rapidly.
Healthy adults might die through no fault of their own. The indiscriminate way this disease can inflict terrible pain, catastrophic symptoms and death – makes it something people wish to fight and eradicate.
Ebola was and still is pretty rare. It spreads and there is no cure.
Victoria’s and other rare conditions are indiscriminate in who they attack. They cause terrible pain, catastrophic symptoms and death – yet it’s not something people wish to fight and eradicate.
Leukodystrophies are rare. They don’t spread easily. There is no cure, because no money will be made by finding one.
Like Ebola, seemingly healthy adults can develop rare conditions too. Healthy adults can develop all sorts of rare stuff, (including Victoria’s condition). But large numbers won’t get it all at once and it won’t spread through human contact. Ebola is important because it’s affecting a great number of people all at once. It might spread rapidly and it may affect people in power. Crucially a cure would also make people money, especially if it continues to spread.
Diseases that make people care the most, will die first.
Today is Victoria’s birthday. Victoria should be 3 years old today.
There are many who have lost children and we know we are not alone in trying to understand it all.
I just hate that we are without her. There is nothing I hate more.
It seems no time ago, that we were trying to get Victoria home. It was such a dilemma. Everyone was saying home was the best place. We knew it wasn’t.
Little has changed in that time other than many nurses have taken to doing Jack and Jill nursing. BUMBLEance is around too and at least there seems to an awareness that very sick children need supports. There is more information available and of course LauraLynn is a huge success.
But still –
Presently Donegal and Sligo are regions that do not have an outreach nurse. This is because we have a paediatric liaison nurse. This wonderful lady is based in Letterkenny and has mountains of children on her books from the sick to the dying. Her remit is huge and if she’s sick or on holiday, there is no cover for her. Due to her post Donegal/NW did not get an outreach nurse when the rest of the country did.
What is a paediatric outreach nurse?
She/He provides a link between home and hospice/hospitals for families.
Their role is to help families;
- in planning care pathways,
- helping with symptoms,
- sourcing supplies,
- liaising with services,
- Planning appointments,
- Home visits – listening.
- Someone on the end of a phone that knows your child inside out.
Of course an outreach nurse does more than the above – but you get the general idea.
At present the Irish Hospice Foundation and HSE are evaluating the service provided by 8 outreach nurses in the rest of the country. The Irish Hospice Foundation funds 5 of these nurses and the HSE 3. I have spoken with some of the outreach nurses and they are just as their title suggests – Reaching out very far and are very over stretched. There is a huge need for their role.
I know that the paediatric liaison nurse is doing all she can for families. But – Donegal needs to be on the map for an outreach nurse before there are more appointed elsewhere in the county.
Charlie McConalogue and his team are questioning the minister and requesting strongly that Donegal is considered for an outreach nurse. As the Donegal Hospice have set aside €180,000 to treat children, I presume some or most of these funds will go to home care packages.
So this is all looking somewhat encouraging. Slow but encouraging.
Victoria if you were alive and well I wouldn’t be writing any of this. How we wish you were here and we didn’t know any of this.
We all love and miss you always and everyday. xx
Thank you to everyone for their lovely messages and help all the time. We are lucky to have to such wonderful friends and families.
Being a pain in the ass becomes one of your roles, when you have a sick child. Many ordinary people find they become almost torturous people to get things to happen for their child. Parents who have sick children have to become fighters, grow a second skin and become almost militant to get basic things. This bothers already exhausted, wonderfully kind people.
Because I am still in contact with people who have very sick children, I still feel I should write on certain things as they ‘appear’.
When your child is sick, some medical personnel don’t want you to have an opinion. You become ‘different’ from your friends and if you can venture out, it is a struggle.
Basically you feel like a total pain in the ass. To get things done you have to be. To survive you have to be. Then afterwards to try to get all of this recognised for others, you definitely are a total pain in the arse.
A few parents have chatted about when people stare. Staring is understandable. I do it myself. If a child is having a moment, a seizure or is crying uncontrollably, it is hard not to stare. There has been a suggestion that parents should carry cards explaining their child’s condition so that they don’t have to explain something that is painful for them. Some have said they become upset and say hurtful things to those who have been staring. This is due to tiredness, frustration and this thick skin they have grown for themselves to survive.
Some have asked me to communicate, if you want to know anything – it is better to ask nicely. Kind enquiries rather than stares, makes people feel they are not on show, but cared about. Educate yourself by asking, but not with a face that says, ‘poor you’ or ‘I hope I don’t catch it’.
I have found also on my travels through all of this, that many children look serenely beautiful or handsome and yet harbour awful struggles to have a quality of life. Many look so ‘normal’ and yet are so sick. I always felt very sick children should look terrifying- but many don’t. It can be hard to tell unless a tube is visible etc.
This video about Mitochondrial diseases, like many horrid conditions it affects children’s insides mostly and leaves them so gorgeous and ‘perfect’ looking.
http://www.youtube.com/watch?v=8PApuJs_vPA. I know of quite a few special children with this condition in Ireland.
Rare conditions in Ireland are not rare enough and I am always grateful to those who read my blog.
I am doing online courses with EUPATI a European based organisation. We’ve been asked to speak occasionally. Still I am uncertain how effective it all is. I know that today I had thought Victoria might give me a day off – but no. Lots happened today. I might get a chance to tell you about it all later, when I know where things are headed.
Victoria is still doing her magic. We miss and love you always baby boo.