Saturday, 25 December 2010

Merry Christmas

Our house has been filled with the sounds of rollerblading- astronauts preparing for hazardous missions in far off galaxies since early morning. The front room is a mine field of discarded wrapping paper, un-read instructions and assorted decorative debris. As I look out on the snow and ice I am again struck by our immense good fortune: we are not forced out in this weather, we don't have to make to the hospital tomorrow for dialysis. Please spare a thought for those who still do and perhaps in doing so, you might consider an organ donor card as one of your new year's resolutions. We are settling in for our third consecutive hospital-free Christmas and for that I am eternally grateful.

Merry Christmas


Saturday, 13 November 2010

Three Years Today

I figured today I'd let the pictures do the talking. Sorry about the technical glitches, I think an ad even snuck in there somewhere - it's been an emotional day!


Tuesday, 2 November 2010

A Winter Tonic.

It was one of those days, I had foolishly turned on the radio only to be assaulted by a torrent of fiscal doom and gloom. The rain was of the biblical variety and the weak spot in the kitchen had sprung a leak, spilling an expanding pool of rainwater across the floor towards the fridge. The mop was nowhere to be found and the anaemic light from the blinking bulb in the hall was vainly attempting to augment the darkness of this November noon; scuppering any hopes of a mop search and rescue mission.

I could feel the clouds lowering and then all of sudden, they were lifted by that reassuring ping of my mobile phone announcing an incoming message. Someone out there was thinking of me. It was a picture message from school. In a single flash of communication technology, this one simple image immunized me against this year's two deadly doses: the weather and the economy. I hope it works for you!


Saturday, 2 October 2010

Subordinated Debt

It's the phrase on the lips of every eejit who's trying to look clever. Personally I think the term was invented in a board room somewhere south of Hades, to be used as a tool to bludgeon the general population into a pulp. I have to admit it's pretty effective, since only fifteen hundred people turned up to protest in Dublin last week at the extent of the country's economic hangover.

Being a simpleton with a less than competent grasp on the state on my own overdraft never mind the national debt, I resorted to my old friend Google. So here goes a bluffer's guide to Subordinated Debt :

There were many more - Google it for yourself, it makes for interesting reading. It occurred to me that children's health services will become the subordinated debt of our solution to the mess in which we find ourselves.

So if I understand this correctly, (which lets face it, in my case is a big 'if') the economic unit on which our future depends is currently being subordinated in favour of the senior units who screwed the whole thing up in the first place.

Permit me an analogy here: a child like our Boy Wonder requires expensive medical treatment to keep him alive, this treatment is attractive to senior medical units because it shows the tangible result of extending the life of that child thus reducing the national child mortality rate, which reflects well internationally on the country as a whole. The effort vs reward equation stacks up well in the short term and saving his life is rightly seen as a senior debt.

Once the danger has passed, the child then slides down to become the subordinated debt of the local primary care authority. In the eyes of the primary care bosses, the child will neither exert enough pressure nor bring sufficient reward to warrant being considered as a senior debt. As a subordinated debt, there is no incentive to provide specialist intervention to allow the child to reach their developmental targets.

When the child ends up in a classroom requiring a special needs assistant or specialist equipment, they can migrate to being a senior debt liability again but the debt has now passed to the education department. The education mandarins will in turn strive to reduce their level of debt on this child by redefining the terms of their liability. Simply put, they will change the terms of the child's entitlement. This change in the terms of entitlement will result in creative reporting from the 'ologists in primary care to meet these new terms and ensure they can off-load the child from their debt portfolio. And so the debt shifts back and forth changing status with each department.

What we all know about debt is that we tend to prioritize our repayments in favour of those yielding the biggest baseball bats should we refuse to pay. Currently the ones holding those lumps of lumber, are unidentified bond holders; nameless, faceless entities beating our children out of the way while they charge to the top of the queue.

This is what comes of living in an economy instead of a society.


Wednesday, 8 September 2010

Losing the Run of Ourselves

Obviously encouraged by the recent bouncy castle success, we threw caution to the wind and booked a short family holiday, on an island no less. Our now über-normal nuclear family casually committed to ferry timetables like it was second nature to us. Admittedly, the planning did start back in the late spring as we haven't quite arrived at the 'spur-of-the-moment-family-break' stage yet but we're damn close! Jess decided that it would be 'good for us' - her words exactly- to have a holiday where we could all cycle together somewhere safe. After much consideration, an island without any sheer cliff faces was considered the best option. Inishbofin - just off the Connemara coast was a no-brainer: close to home, few cars, beautiful beaches and best of all a house with an enclosed garden to rent - what's not to like?

That, of course was the easy part, the difficulty was getting a date to fit with Rory's ever increasingly frequent 'olgist's appointments and the other kidney's hectic work schedule. This short break was subject to some of the most elastic scheduling ever witnessed by any aspiring tourist! The elastic finally snapped when the school bell rang again in September, so we opted for the first weekend after the dreaded school return, figuring it might lighten the back-to-school blues for our less-than-enthusiastic pupils.

And so off we went, I stressed as usual over the packing, with copious lists and then some lists about lists and more just-in-case supplies than your average UN African peace mission. When we arrived at the quayside I was marginally concerned that our luggage may sink the rather tiny looking ferry. I say tiny only because the patch of Atlantic that stretched out between the pier and the island looked so vast and I, not being blessed with a pair of sea legs, was not relishing the short but inevitably bumpy crossing. Boy wonder, on the other hand was positively buoyant at the prospect of having his guts rattled by the waves! While the local insect life feasted on my face (judging by the trail of bites still visible across my cheeks, I was clearly a rare delicacy in those parts) we loaded on to the ferry set sail for our own little treasure island.

What followed were two days of sheer bliss. The sight of Boy Wonder's be-helmeted head thrown back, arms out-stretched in joy as he sailed down the fuchsia-filled lanes on the back of his father's bike will keep me warm right through the cold winter ahead. Jess got her wish and we cycled every navigable lane on the island - and as it's been a while since I've been on a bike, I now have the John Wayne walk to prove it!

It was a fitting salute to the brave Tour de Picnic crew, cousin Dave and Auntie Mags, who cycled the 90km from Dublin to Stradbally in aid of Temple St. Hospital that same weekend. Thanks to all of you who supported their fundraising so generously, because of your help, the event raised almost a half a million euro for the hospital's neurology department.

You could say it was a great weekend all round.



Tuesday, 24 August 2010

The Future is Bouncy

Ever since his birth I have avoided looking forward, choosing instead to be grateful for each 'present' with Boy Wonder. The future was not our country, we had no business there. Today, on the occasion of Boy Wonder's seventh birthday we allowed ourselves the indulgence of a day-trip to the future. We fearlessly planned a party but not just any come-over-we're-having cake-event, this was a full-blown, bouncy-castle bonanza.

It was delivered shortly after noon, he had to stand on a chair to watch through the kitchen window as it inflated before his incredulous eyes. His sister swelled with pride, hardly daring to believe that this festive event was destined, at last, for her back garden. The call came from the other kidney minutes later, 'the guy says he needs two kids to test this yoke'. They were like bullets out of a gun, whizzing out the back door. The bouncing began to shrieks of laughter and whoops of delight; the facility being thoroughly tested and declared party-ready before the cousins arrived. The afternoon was dry and we settled around a garden table, which creaked under the weight of palette-tickling party food. Pots of tea punctuated the ease of the gathering, all relishing the now while acknowledging but not dwelling on the past.

This is, dare I say it, yet another milestone; his birthday has magically morphed from difficult memory to joyous celebration. He has asserted his seven-year-old self and demanded his own gifts, written his own guest list and dictated his own day. I had never let myself travel as far as to even imagine this day. To see him seemlessly, breathlessly and brazenly snatch it, has been one of the greatest thrills of my life. Long may you bounce my boy, long may you laze in the love of all around you, long may you and your sister make us feel like we have glimpsed into the future and been granted the world.


Friday, 30 July 2010

Summer Fun

I couldn't think of an appropriate way of describing the joy of summer holidays spent without the restriction of travelling to Dublin three days a week for dialysis, so I thought I'd just show you instead.


Wednesday, 7 July 2010

Guest Post

A post with a difference today - My nephew is doing a charity cycle - one of the best ideas for a fundraiser I've heard in years it's the Tour de Picnic - a cycle from Dublin to the Electric Picnic Festival in aid of Temple St. He has a target of 500 euro to reach by late August so he's putting out the call. I appreciate times are tough so no pressure here folks but if you do have a few spare quid (rare these days I know) and you would like to see a good return on your investment, this might be just the thing for you! Or better still if you fancy fighting the summer flab and getting into training yourself, this could be a great day out and you get to attend the festival for free afterwards. Sounds like a win / win scenario to me!

Hey Guys,

I'm doing a fundraiser cycle event for charity and I have created a fundraising page on
The Temple Street Children’s University Hospital is a very worthy cause and I would very much appreciate your support in helping me to raise funds for this charity.

All proceeds go directly towards purchasing vital life-saving equipment for the Hospital, in particular
the Neurosurgery Department. I became very aware of the special work this hospital does just a few years ago when my young cousin was born without both kidneys. Through the work of the staff he was kept alive until he was able to undergo a kidney transplant operation. By donating to this charity you are contributing to the vital work needed to assist children who are suffering from life-threatening brain and spinal conditions.

Click on this
link and see what I am doing and when I am doing it. You can sponsor me by credit or debit card through the webpage that I have created. Don't worry, the site is very secure and your credit card information is very safe. Please give as generously as you can.

Thanks in advance for your support,

Regards, David


Saturday, 19 June 2010

This Place is Crack-a-Lackin!

Dear Galway Dive Club,

I took Boy Wonder for his routine post transplant check up in the Renal Clinic in Temple St. last Thursday. Although word had reached us that Olive, the play specialist, had transformed the clinic waiting area into a jungle, nothing could have prepared us for the gasp of delight from our little man as he rounded the corner. His eyes lit up and he stood rooted to the spot, momentarily speechless, until he turned slowly and announced to the assembled staff and kids that this place is crack-a-lackin'! High praise indeed from a very discerning young man who, in his short 6 years has seen the inside of most of the Paediatric facilities on this island, and some other islands too!

This magical transformation was entirely financed by the sale of your beautiful calendars. I was incredibly moved by the fact that a group of people who had probably never even been to Temple St., contributed their time and energy into raising money to enhance the lives of kids like our Boy Wonder. For kids with renal disease, frequent hospital visits are an all-too necessary part of their childhood. For parents, having a joyous and welcoming hospital environment lifts our spirits at a time when they in danger of being quenched.

Please know that the money you raised has already made a very important difference in the lives of the kids and staff of the hospital and will continue to do so for many years to come. Take pride in the fact that your efforts will be the ingredient that will help a scared child overcome the worry of an impending blood test or provide a frazzled parent with a welcome distraction from the drudgery of dialysis.

Thank you for thinking of us, our tough journey has been eased by your concern.

Wishing you good luck and awesome diving!



Saturday, 29 May 2010

Late and Lame

The HSE have now confirmed the shocking total of 37 children who have died while in the care of the state, 18 of whom died of 'unnatural causes'. We wonder how this can happen and why nobody has been talking about it. Let me give you a little insight into why these appalling statistics do not surprise me.

As you all are sick of hearing - in July 2008 boy wonder was referred to a speech therapist employed by Enable Ireland; a HSE funded organisation charged with the care of children with a physical disability. In the words of the Attorney General of the State of California, this particular therapist was ' a threat to public safety'. The Children First officer charged with the implementation of child protection guidelines within the HSE West issued a report in September 2008 stating that by referring my child to this therapist, Enable Ireland were in breach of these guidelines. It is almost two years since that report - and almost a year since I had my son's services transferred to another service provider. In all that time I had no contact from Enable Ireland, until a letter arrived last week from the medical director who is a consultant paediatrician.

This is what it said:

I would be very pleased to discuss Rory with you at a time that is convenient.

I know that you had a number of concerns about Rory and the Enable Ireland services and would wish to address these with you.

Best Wishes etc etc.

Two years after such a serious incident I get this kind of nonsensical response. And the icing on the cake: both my name and address were written incorrectly.

Now tell me, would you bother meeting a muppet like this?


Wednesday, 19 May 2010

More Munchies Mr. Mozart

Rory's been on a steady diet of Mozart and solid food lately. Yes, your eyes do not deceive you, I said solid food, well incredibly mushy, puréed solid food, but food to be ingested by the mouth, so technically it's solid OK? Are these connected I hear you ask, who knows? They have certainly coincided and we have noticed Mr. Mozart working more than mere musical magic with boy wonder in the past so draw your own conclusions.

So here's the deal, boy wonder recently completed a three-week intensive listening therapy programme with an amazing speech therapist who worked with him some years ago when he was known as tiny tot wonder. At that stage he was still sans kidney and hadn't even learned to walk, but he was covering some ground at high speed on his be-nappied rear end - leaving miles of high gloss shining floors in his wake. We even considered hiring him out to contract cleaning companies such were the lean-mean-polishing-machine like characteristics of his developmentally-delayed derrière.

But I digress, he was well shy of the 10kg body weight required to even be considered for a transplant and since he had no urine output his intake was severely restricted to 450ml per day. A mere 'wee dram' in drinking terms. We were desperate to get him to eat so we could beef him up with some solid calories. A course of Therapeutic Listening was prescribed - it sounded non-invasive and pleasant and well, we were running out of options so we gave it a try. The effects were astonishing; within weeks he had been weened off his anti-hypertension medication and was as mellow as a Californian surf dude on a sunny day.

We had tried to do the intensive LIFT programme a few times since the transplant but there was always some impediment, a tummy bug, a hospital admission or just general meltdown.So, by a series of serendipitous encounters, all far too complicated to go into, we found ourselves at the Listening Therapy Centre in Galway in mid-April.It was one of those extraordinary cases of the very right place at the very right time. Rory had two hours of Mozart five days a week for three weeks, during which time, with the supervision of our Temple St dietitian we cut back on his liquid calories.

At this time he was eating a Petit Filou yogurt daily at school but still refusing point-blank to open his mouth for food at home. The listening therapist felt it would be imperative to widen the range of locations in which he agreed to eat, home being the last mountain to climb. Within two days, he was eating during his therapy sessions and by the end of the first week aided by bare-faced bribery and without too much protest he tasted food at home.

We have now arrived at the stage where he is eating a full jar of baby food at school in the morning and a range of puréed fruit and veg in the evenings at home. The bribery has radically diminished and the protests have all but disappeared. Even as I type I have to look twice at that last sentence, pinch myself and swear I'm not making this up. Suddenly our horizons have been utterly transformed, the tantalizing thoughts of family mealtimes, even a restaurant outing are flagrantly stalking my day dreams without fear of ridicule.

I think we can officially claim this as progress!


Tursday 20th update:

This must be our week - our nurses have apparently been reinstated. We can't be sure because of course we haven't been told, but it appears the nurses have been told to turn up - when and for how long? Well we'll just have to wait and see won't we. Obviously we will be the last to know, as such information is highly sensitive and probably top secret... so, if anyone asks, you didn't hear it from me.


Tuesday, 20 April 2010

Words from the Western Front

I've just watched the BBC 2 programme on Great Ormond Street Children's Hostpital Renal Unit. I had forgotten how hard it was when Boy Wonder was a tiny baby. I had blocked out all those life and death moments, the meetings in those tiny rooms with medical teams, the surgeries, the ventilation. I had almost forgotten, shame on me, that I have the extraordinary good fortune to share my life with a miracle.

I was so caught up in a mind-numbing stateless stand-off with the hard-hearted entity with the wonderfully ironic moniker: 'The HSE Primary Continuing and Community Care Unit'. They nearly took my sense of wonder away and more fool me, I nearly let them.


Thursday, 15 April 2010

To Win Just Once

It's been a rough week. Community Don't Care are battering us yet again. I'm tired. I'm sleep deprived. I'm fed up and really not very user friendly at the moment. My lifeline has been cut. One night a week we had a nurse look after Rory. It meant a full night's sleep. A glass of wine. A life. Three weeks ago, the nurses stopped coming, just like that. No word. No communication, nothing. The HSE informed the nurses their services were no longer needed. Nobody called us. Nobody asked if Rory's situation had changed. Nothing.

I know I need to get my fighting boots on but my soul is tired. I'm battle worn and low on victories. I'm out of words so I'll let this song say it, while I re-charge my flat battery and dust off my flak jacket.


Saturday, 27 March 2010

Organ Donor Awareness Week 27 March - 3 April 2010

Last year 90 families, who were forced to say a final farewell to their loved ones, made the ultimate act of extraordinary compassion by agreeing to organ donation. These 90 grieving families' decisions saved the lives of 243 people in 2009.

Spread around the country there are now 172 people with new kidneys, who no longer have their lives on hold because of their dependence on dialysis. They are currently busy planning holidays, returning to work or study, maybe even running after grandchildren: activities which would have been unthinkable for them in 2008. There are a further 64 people who received the gift of a new liver; 11 were given new hearts and 5 more are breathing easily for the first time with new lungs; 8 others have thrown away their insulin supplies because of the magical arrival of a new pancreas.

Our friends in the amazing transplant team Beaumont hospital, with a level of productivity possibly unique in the Irish healthcare system, have raised their number of kidney transplants from 146 in 2008 to a new annual record of 176 in 2009. The HSE in its wisdom, has penalised this success by not increasing the budget to meet consequent strain on existing resources. As a result, the team were forced to export two donated kidneys and a pancreas to the UK transplant system because there were no available beds for the prospective recipients in Beaumont.

To quote the late Frank Deasy: Organ donation contains a possibility almost unique in modern life. We, the general public, can make a difference. It's not like the economy, the climate or Afghanistan. ...Your consent is the missing element in the equation of saving lives. That's pretty extraordinary.

Just in case you need further encouragement; this is what a successful kidney transplant looks like:
Donor Cards are available from your local pharmacy or simply free text the word DONOR to 50050. When you get your card, please remember to discuss the issue of organ donation with your family and make them aware of your wishes.



Monday, 15 March 2010

The loss of a Healing Heart

We lost a good friend this weekend. A hopeless romantic, whose heart balanced proudly on his (always well groomed) sleeve. That heart worked overtime for 46 magical years: loving, laughing, comforting until it finally wore out from sheer excess of love and kindness. This loss will leave an open wound in the heart of his family but also in a global community of friends.

Farewell - safe journey to wherever it is you're going. If we could beg one more favour of your healing heart, it would be to ask you to help those left behind to learn to live without you.

Although the world is so much darker for your passing, it is all the brighter because you have lived.


Saturday, 13 March 2010

The Rogue's Progress

It's been a funny few days, both of the Ha Ha and the peculiar variety. Boy wonder has settled down again in school after some post Christmas glitches. He is now regularly allowing me to brush his teeth with toothpaste. At school he is wolfing pots of Petit Filou yogurt and drinking water from a cup, however his lips remain sealed to food at home. This 'some places I'll eat and some places I won't' development has led me to my latest ground breaking clinical analysis of my nutritionally challenged son: it's a sure case of he's a pup and I'm an eejititis. A very common condition apparently, among six year old son's and their mothers. The only known cure is large doses of common sense and intravenous patience, in some cases it can lead to carer transplant, at it's most chronic, clinicians have been know to call in Supernanny!

Life being too short to obsess and our health being good, I prefer just to be grateful for the progress we have made; it seems like another life time when I wrote this post. Since this time last year, boy wonder and his mad mother have changed so much that we can hardly imagine how we used to cope back then, when life was so challenging. Although our support services have been moved from the Tallaght-Hospital-type basket case that is Enable Ireland - we have yet to see anyone from our new service provider. After the initial meetings in December we were told we would be seen by February 2010. February came and went, March is halfway out and still we wait. That wait no longer keeps me awake at night; I consider that to be the most amazing progress of all. I no longer feel like my son's development is being compromised by bloody minded bureaucrats. We have taken back control and we are moving forward. A sense of control is the alchemy we lacked for the last six long years. We can now transform obstacle to advantage despite the best efforts of the HSE to bludgeon us into silent submission.

We are the lucky ones, 58,000 patients who attended Tallaght Hospital for X-rays may not be so fortunate.

I am also very happy to announce that my ramblings have been shortlisted, in some very auspicious company, for an Irish Blog Award in the Best Specialist Blog Category. I am humbled by the nomination and amazed that people other than my nearest and dearest take the time to read this blog. Although I have said this many times, I will say it again - your companionship has lightened our load, and for that, we thank you.


Saturday, 6 February 2010

Hostage to Fortune

The problem with having a child who leaks is the inevitable laundry mountain. Daily drips require frequent school uniform changes, and nocturnal emanations contribute to damp bed linen filling the large laundry basket with alarming frequency. The only course of action for a relentless laundry pile is a reliable, out-sized capacity washing machine. I recently (and now in hindsight I realise - somewhat foolishly) openly commended the loyalty of my trusty Zanussi. 'The best thing ever to come into the house' I pontificated to a friend over coffee. Clearly, these were the proud words of a desperate housewife heading for a fall.

The following morning, I innocently went to release the previous night's bedding from the Zanussi's cavernous 8kg drum. I was met by a resolute 'Error 666' message and a door which had been seized shut in protest; my bed linen taken hostage and my wits tested. Being rather slow of a morning, it took me a few foggy moments to work out what was happening. The reality of life without a washing machine was too terrible to contemplate.

At first the repair man seemed positive, there were some signs of life "she's a lovely model alright and the motor looks like it was installed yesterday, when d'ya buy her love?" I thought, initially anyway, this was grounds for hope. With the elastic quality of time playing tricks on me again, I was unable to pinpoint the date of purchase with any degree of accuracy. However, I did remember that I had paid for it in Punts. With this, his brow furrowed and his left eyebrow twitched vertically " I see, so she's a pre-Euro model then is she? That might make the parts hard to come by" Optimism was ebbing from my every pore at this stage. We were facing yet again, another agonising wait on a transplant list. Our only chance was a fruitful harvest from some other household's now deceased pre-Euro model, with the extra large drum and the 1200 spin. He showed me the burn marks on the circuit board, the last load of heavy sheets apparently dealing the coup de grace to this once noble appliance of science.

And so we waited - and though God knows we had experience, it didn't make it any easier. I calculated the exact tipping point where my expensive trips to the launderette were going to exceed the cost of a new machine. Boy wonder was leaking just as fast as my wallet, this couldn't go on. I was on first name terms with the staff in three local launderettes - not a good sign.

Last Wednesday, we bit the bullet, and coughed up 420 Euro for a replacement. It's the large drum you see, you pay through the nose for the extra capacity. I may have to put a claim on boy wonder's future earnings, perhaps a small dividend from his Communion money in 2013?


Thursday, 28 January 2010

To Pee Or Not To Pee

To pee, or not to pee: that is the question:

Whether ‘tis nobler in the pipes to suffer

The slings and arrows of dodgy plumbing

Or to take a scalpel against the seized u-bends

And by a nip and tuck mend them? To plumb: to leak

No more; and by a surgery to say we end

The heart-ache and the thousand wet nappies

That we changeth daily, ‘tis a consummation

Devoutly to be wish’d.

Yesterday, after many false starts, we met with the surgeon in charge of Rory's future plumbing. There's much to consider. He's got some developmental ground to make up before we can even consider fitting him with a new run-off pipe. It's a lot to take on board. Is it wrong to be relieved that the surgery is on the long finger? I couldn't cope with another major theatre episode.

With sincere apologies to Mr. Shakespeare, but I if were indulged, I fear you may get the full belt of a very long soliloquy. I'll spare you the pain and go instead to research the latest in juvenile plumbing.

Anyone got a secondhand copy of that revered tome: Bladder Augmentation for Beginners ?



Thursday, 14 January 2010

Dear Make A Wish

Dear Make A Wish,

A thank you letter seems too inadequate to express what I want to convey. You have not only sent us on the holiday of a lifetime, but you have also opened a door to a world of possibilities sealed shut for so long, that we had given up trying to pick the lock.

Let me try to list some of the joys you have bestowed upon our family: thank you for giving Rory the chance to stand up in a crowded Aer Lingus Paris-bound flight and instruct a whole plane load of passengers in his best school teacher voice, that he wanted ' Gach duine isteach sa line' so that we may disembark in an orderly fashion. Thank you for allowing Jess to walk up to French immigration officers and show her passport like a pro, while telling them to get a move on as time was ticking on her three day Euro Disney pass. Thank you for that wonderfully kind driver who met us at the airport, all breathless with enthusiasm for the Disney delights awaiting boy wonder and his big sister.

Thank you for the hotel; sparkling like a New York department store on Christmas eve, where we ate pizzas shaped like Mickey Mouse and splashed in a pool shaped like a ship. Thank you for giving our kids the chance to giggle 'till midnight and order room service like pampered celebs. Thank you for the magic of three whirlwind days of wide-eyed wonder surrounded by Goofy, Mickey, Minnie and friends. Thank you for a Monster's Inc Mike toy, discovered in the back of the gift shop after years of searching, which by the way, led to an emotional reunion with Sully back in Galway. Thank you for the glee of the Peter Pan ride, the wow of the Studio, the twinkle of the lights, the fairy dust and the kindness of strangers.

You have broken our travel taboo, we have found our lost courage and are now ready to take on the world. We have started to plan again, you have no idea what that means to a family who, for six years, have been locked into their own high tech medical world of hospital visits and sleepless nights.

Our wish was for a normal life but you gave us the world.

Thank you,

Boy Wonder and family