A White Christmas begins right here.

It’s been a while since I blogged. Time hasn’t permitted an update until now.

The past few months seem to have been a whirlwind of fund raising, food studies and hospital. And it wasn’t until I reviewed my diary that I realized how often Chase has been ill this year. With close to 7 weeks in hospital, countless courses of antibiotics, piles of sleepless nights and attempts to undo the tightening binds of CF we are reaching teh end of the year with another possible hospital stay. Chase is again unwell but determined to stay home for Christmas.

Fingers crossed it’s just a bad year and not a trend. A trend like that isn’t one we want to follow.

But this year has also seen an incredible story unfold - Chase New York Dream.

With little more than a request for fund raising ideas on Facebook, the response was astounding. Over 450,000 hits on his FB page, over 630 friends from all over the globe - from Bulgaria to Nigeria, and from Invercargill to Northland.

The fund raising efforts have been incredible and very very heart warming. From the mighty physical challenge of cycling around Lake Taupo at the end of November, to the preciseness of clay bird shooting last weekend; from the efforts of the incredible cooking teams baking up a storm to the supportive and nurturing business sponsors that have come on board. To the gorgeous auction nights onto the selfless and very generous donations offered freely by so many, Chase myself and our family are incredibly humbled, and those are not just words.

The New York dream isn’t just alive and well, it’s bubbling with excitement!

A kernel of a dream has become a reality for Chase. A goal to stride towards with arms held wide open; a goal that reinforces his need to stay healthy; a goal that is a reminder that we can all dream, however it takes action, perseverance, commitment and often the support of others to make a dream a reality.

As we head into this weekend it will be a year before Chase steps aboard the plan and wings his way to the Big Apple. He’d start packing now if he could. ‘Patience’ for Chase has never been a strong suit (a little like me in that respect!)

So we head into Chases 10^th Christmas, a little wiser, a little more wary of the future but overwhelmingly secure in the knowledge that regardless of today, Chase will be winging his way to New York City in 2012 for his White Christmas thanks to the incredible support from some of the world’s most fabulous people- people just like you

Merry Christmas and may you grab hold of your own dreams and make them real.

Life without Chase

Have you ever stopped and thought back on what life could be like without your children?

I did today and it bought me up short.

• I’d probably still be working for other people and not running my own business
• I’d probably still be buying clothes that just make me look hideous in the name of fashion.
• I’d probably still be sitting cradling a wine, or in my case a scotch ‘n dry in a pub
• I’d probably still be waiting for a certain man to call me
• And I’d be thinking of what life would be like with kids!

Instead I have been gifted two wonderful children, one of which has tremendous hurdles to overcome both with his health and his learning.

And today he made me proud!

Today Chase made the semi-finals of his speech competition – they announce the finalists next week… fingers crossed.

His speech which became a ‘rap’ was about his friend Helen Clark. Having met her in 2008 and stayed in touch and following her new journeys at the UN in NY , Chase chose her as his ‘Special Person who Influences Me”.

Although this might seem a small school exercise for Chase it is huge; overcoming the hurdle of not being able to write legibly to meeting the task head on and seeking support, including from Helen herself.

Chase’s attitude to life of just living it has made me appreciate so much more of what I have as opposed to what we don’t have.

• We don’t live in a flash house, but it’s full of love (and the odd adult-child argument!)
• I don’t drive the latest model car but it works and gets us to where we need to go when we need to be there
• My clothes serve a purpose – to be comfortable so I can concentrate on the job at hand – regardless of whether I am in a client meeting or cooking up a storm for my boys
• And I more likely to be seen hooking up a can of TwoCalHN than a scotch.

We travel, we visit friends, and we make new friends with special people. We look outside our world to help others and we love.

This all of this has been possible with Chase’s existence.

He has taught us to look outside ourselves, to respect the life we have and to look beyond the material and to focus on the experience.

Life is after all a journey not a destination.

Lifes most valuable lesson learnt

Well tomorrow Chase turns 10.

What a milestone.

I was cleaning up photo albums the other day and came across the baby books – you know the ones, the ones we are determined we’ll keep up to date and never do… the ones we are proud to show off for #1 and then # 2 comes and there never seems to be the same amount of time available.

Anyway I came across Chase’s baby book, flicking through I looked at all the milestones, the weight gains (and loses), the medical procedures , the operations and then I looked at something else – when he first walked, talked, got his first tooth, first swore..

Most of them were blank – the first swear word I remember vividly – at the lights waiting for a red… Oh F---“as in rhymes with truck – wonder where he had heard that before at a red light!

Anyway, what struck me was the number of ‘normal’ things missed. Chases first year is literally a blur for me as we came to grips with dealing with this big unknown Cystic Fibrosis.

CF was to become what was like a member of the family – to be understood, disciplined and cared for. To be given the attention it needed.

Sadly it became a larger part of our family than I would have liked looking back now. It overwhelmed Steve and I as we tried to manage life in a way we hadn’t anticipated when we first had Chase.

Chase of course sailed through it all accepting all these adults into his life that would play such a large part in trying to keep him healthy.

We are thankful for those friends every day – his Doctor, David, his CF nurse Dee, his physio team and his dietician Annemarie.

They’ve come to understand Chases challenges with CF and his intellectually disability and love him the more for it. They have helped me cope on those days when it all seems just too damn much.

But most of all they have been there – guiding, listening and helping us get a handle on this hideous disease CF.

As I write this, a dear friend now living in Australia is fighting what may be her last battle with CF as her new lungs are rejecting her.  My heart breaks for her, her mum and her family as she is so young – but this is the reality of a disease that has no cure, that systematically destroys every organ in the body and slowly lessens the quality of life.

And through this gloom an incredible light shines through. A light that warms the body, that soothes the soul, for unlike many others , we as a family have learn one of life’s most valuable lessons

Live Life Today fully and you create a lifetime of memories

Happy Birthday Chase may we be blessed with sharing many days like this with you 
Love Mum  

Chase's Heartbreak :(

I received an email yesterday from a group that organizes sport for youth with disabilities.

Nothing new in that, I’ve received many over the years but have chosen not to respond. The main reason was that we don’t see Chase as having a disability- more a health issue that causes him some challenges.

CF itself is a health issue. It’s the affects of it that can cause the disability – for Chase he has a serious lack of gross and find motor skills. This is mainly due to his body inability to get the nutrients from food that he needs to build muscle and strength.  

Chase has never ever let anything stand in the way of his love of sports. From Saturday school soccer to summer athletics he is always in there trying his hardest to keep up with his mates.

On Monday, Chase’s school had Rugby League. Chase was just so excited because he was getting to play. He went off to school with the hugest grin.

That sun warming grin was replaced with the saddest face I have ever seen Chase wear.

The sadness came from the fact that like many of the other sports teams Chase tries to be part of; his lack of skills is seen as letting the side down so he is benched more than he plays. And for the league tournament – the other kids wouldn’t pass him the ball.

My heart just broke for him.  We know Chase isn’t the best – but his attitude and will to play often exceeds some of his more able team mates. We also understand the teams desire to win, Chase wants that too.

So when this email came in, I read it. Then I read it again. Then I asked Chase if he’d like to go and check it out. Of course he was going to say yes- it was sports!

So we went and can I say it was the best thing I have ever done for my gorgeous son.

Chase was in there and having a ball. he didn’t know what to do and he was shy initially but he soon got over that as everyone made him feel welcome and more importantly he wasn’t side lined for making a mistake.

He wasn’t benched for getting it wrong – he just tried and tried and was rewarded when one of the bigger guys asked him if he’d like to SLAM DUNK as he was lifted skyward.

If only I had that damn video camera – it would have been priceless.

Still there is always next week – yep we are going again.

Our thanks to have to go to Sports Opportunityas well as to John Davey CEO of Waikato Basketball for the wherewithall to think of Chase and make the contact for us

THANKS GUYS for making Chase smile!

The Journey has Begun!: The magic of film

The Journey has Begun!: The magic of film: "Last night Chase got the opportunity to go to a Basketball game. The Waikato Pistons were playing and Chase loves his sport so off Steve and..."

The magic of film

Last night Chase got the opportunity to go to a Basketball game. The Waikato Pistons were playing and Chase loves his sport so off Steve and Chase went.

I sat home watching a DVD that almost scared me into a heart attack – 'Sanctum' a movie about caving and diving and I can highly recommend if you're not like me and aren't claustrophobic

But my heart wasn’t the only one racing.

Chase was given the honour of taking the ball onto the court at the beginning of the game. He then got to sit with the team! All of this organised by the guys from Winger Subaru and the Pistons themselves.  And it wasn’t just a case of just letting him do it. Because it was being televised live by SKY, permission had to be sought.

Chase’s eyes were as round as saucers when he got home and was explaining his night. I was just so happy for him.

And that’s when I got a tad grumpy; grumpy with myself.

Grumpy that I can’t seem to find a way to just do a little more to earn a little more to buy a video camera. Now that’s a luxury I grant you. Many families don’t have one.

It’s just moments like last night I would love to be able to capture so Chase can visit them again later on. There’s magic in being able to see yourself and I don’t think that magic truly disappears even if we not 100% sure that we like the way our hair was, or the extra few inches that suddenly appeared!

We have the TV documentary showing Chase. We even have loads of photos, just no other footage of stuff. Stuff like Saturday soccer, like Cross country and triathlons. No birthdays or holidays.

It is a case of we eat and in Chase’s case eat as much as we can get down him, or we scrimp and try to save those few hundred dollars for a camera.

The food seems to take priority and at the end of the day I’d prefer to have Chase here that just watch a movie, but wouldn’t it be nice.

But for now the camera can wait, I am just going to keep making sure Chase has nights like last night, that he keeps living his life without stopping for the right angle, the right light or even the right pose.

Got to love those Waikato Pistons though!

Who deserves to be born?

So the doco has hit the airwaves and with it comes the debate.

I expected the Right To Lifers to come out swinging – but maybe they were all in bed at that late hour. The negative interestingly enough from an unexpected quarter – from Adults living with CF.

They are right in some respects – the documentary was sad, focusing on CF as an illness with no cure. (Fact)

Yes there are better management practices now and life is being extended further and further for people living with this condition.

However, all of this goes out the window when as a parent you learn of yet another death of someone under the age of 16. One more of the children that you are used to seeing at the other end of the corridor have passed away and the fear you have for your own child resurfaces.

As a parent regardless of the condition your child faces, there is a certain amount of guilt, sadness and grief that you work through. Some work through quicker than others. So is anyone wrong in this?

No. Feelings are real irrespective of others opinions. They are the feelings of me as a mum.

We don’t for one moment regret having Chase; in fact I discuss this in the doco; that we wouldn’t give him up for all the tea in china. We adore him and the fact that CF has given us a new window on the world, one filled with compassion, heartwarming friendships and an opportunity to fight for a cause bigger than oneself.

So for all the adults with CF who criticize my feelings as a mum, I suggest you ask your own parents – was there ever a day, a moment when they didn’t feel a sadness that went to the very core of their being, a guilt that didn’t threaten to overwhelm them and a fear that made them question their ability as parents?

This is the role of parenthood and the documentary focused on us as parents, not on Chase and his outcomes but us and how we face a life with CF. And yes it is different from how Chase faces it. It is different to how Chase will face it when he becomes an adult.  And it may well be different to how adults with CF face it.

But just because it is different doesn’t make it wrong. Respect that at least.

Waikato Winter & CF - it can suck!

It’s that time again – winter in the Waikato. Damp foggy days that lead endlessly into one another.

Apprehensive moments when the power bill deposits itself in the Inbox.

And then there’s society – just waiting to share itself with us. And when I say Share I mean Share.

Yes It's Bug season!  

The time for flu’s and colds, for sniffles and sneezes and the time when we know Chase is more at risk for catching yet another chest infection.

It’s not the cold, the bugs hate the cold. It’s the warm damp inside conditions that seem to affect Chase the most. The warm, almost stifling class rooms with their heat pumps. The closeness of class mates as they share their lunches and ..dare I say it... SNOT!

So what do we do?

We worry. We plan and we spend extra time being more hygiene vigilant.

Washing hands, burning tissues immediately and getting out into the crisp air for some good lung burning exercise.

Finding time to live and ignoring the bugs has been my plan to date. It doesn’t always work and Chase invariably ends us with the odd bout. This typically only really happens when his weight drops. Keeping him warm is probably the biggest challenge.

He’s 9yrs old and just wants to move, and with fewer clothes on, the better. Running around outside in the ankle deep mushy-wet grass, no shows with no jersey to protect him against the blast of the southerly and yet he feels hot.  

The old saying “Put some clothes on, your mothers cold” springs to mind.

So what do I do?

I yell “get some clothes on or get inside” as I rap the window for his attention hoping it doesn’t shatter.

I crank up the oven and put together bowls of hot fat laden macaroni cheese, just to try and add an extra layer of fat to his skinny bones. I load up the school lunch box with chocolate bars and tasty treats to tempt him to eat just a bit more.

And Chase and I together, spend sleepless nights as we rely on a machine to feed him extra calories so he can remain well.

All in all, winter takes its toll. But not for one minute would I change it.

No matter how grey the slate like sky is. No matter how murky the drizzle becomes, Chase walks into the room and the sun shines through.

For that I am thankful for winter and every other season that Chase shares himself with us.

The Journey has Begun!: When two words just aren't enough

The Journey has Begun!: When two words just aren't enough: "Have you ever noticed that one of the simplest words is often A) the hardest for some people to say and B) a word that just doesn’t quite sa..."

When two words just aren't enough

Have you ever noticed that one of the simplest words is often A) the hardest for some people to say and B) a word that just doesn’t quite say enough for you?

I’ve struggled with the words Thank You all day. Not because if find it difficult to say, but because it just doesn’t seem at all adequate.

It just isn't enought when we want to acknowledge all the fabulous people that turned out last night for the Girls Auction Night in support of Chase.

Having raised a gynormous $2,119 (and yes as a marketing expert I am allowed to make up new words) we had underestimated the support, care and love of the community.

We also had underestimated how a dream can inspire people.

There were two important factors when it came to deciding whether we did an auction night:

1)    that Chase could be part of it as he has to earn this money

2)    that others had to gain from it as well.

And I’d like to think we achieved all of that and more.

• Lovely women like Debbie from Tupperware, Misty from Le Reve, and not forgetting Rachelle from Nutrimetics got a chance to promote themselves and sell some fantastic goodies.
• Newly self imposed business woman K-M Adams also got a chance to demonstrate her amazing skills as MC and auctioneer for the night,
• And of course magnificent profiler Kevin Mayall was on hand to share some great secrets.

None of this would have been possible without the other donations and support from:

• Vibra-Train.
• All Sorts Store
• Capelli Studio
• Heritage Gallery
• Vault Financial Group
• Hamilton Party Hire
• Louise Bourke Super Chef
• The Demo Girl
• The Loaf Company
• John & Judith from JC Trailers
• Hamilton Rivercity Lions
• Fully Equipped
• Artist Keren Persson
• Jon Broadley
• and not forgetting Sue Moroney and her Labour Party Colleagues, John Key and all the other MP’s who supported this cause.

When we were asked why we’re doing this now and not waiting until Chase is older, we had to be honest.

In all reality we don’t know how old Chase will get.

We plan on him getting married and giving us grandkids, but in case that doesn’t happen, we’re not waiting for tomorrow to make a dream come true.

As a family we’re living every day right here right now. 

• The days that are fantastic and the days that are not so hot
• The days when we want to chuck in the towel as we are faced with yet another hurdle
• The days when we’ve found a way around the hurdle and propel ourselves forward
• The days when the sun is dazzling the horizon with its blessed warmth and the mornings when the fog refuses to loosen its grip on our chilled bones.
• Each day is a blessing and gives us another moment to imagine and create our  dreams.

Dreams are for now, they are about planning, organising, smiling, laughing, giggling and most of all for making sure they can be realised.

So as we head closer to Chase’s dream, the words Thank you are simply not enough.

“Kia ora” says it so much better

Ngā mihi nui

from Chase & I

Is one Love Enough?

“We love our children the same”. “All our children are loved the same”… inane comments voiced to justify some worthless societal demand.

Is it possible to love our children the same? I have never believed, even growing up that it was possible to love two let aong more children the same.

And now I face my own family journey, I am loving my boys differently.

The word ‘differently’ is the crux of the sentence – is different good or bad?

For me loving my boys differently doesn’t have to be the negative experience of my own childhood.  

For me it is simply about reflecting the differences in my boys

Chase, my first born.

My eldest.

Chase, my almost ethereal being.

Chase who wanders the world in a constant state of delight and excitement.

Chase, my wisp of a child who at challenges those of us more rooted to the earth.

Chase who simply loves no questions asked. Who cares no demands made, and who gives of his heart willingly and in totality.

Then there is Joshua.

My beloved second born.

Solid, definite in who he is.

Loving but cautious. Withholding a little of himself just to be sure.

Joshua so vocal and warm, with a hint of his own terms shining through the glow

Joshua who decides when and where.

 Joshua who questions and focuses. Joshua who fixes.

And I love them so very differently.

• Chase is and will always be my first Love.
• Joshua is my future and my hope.

Each is as important in my life as the other, but each brings their own sense of worth and value.

My role is simply to provide the love that will enable each of them to take their potential and blow it to smithereens and grab life no matter what it throws at them with both hands regardless of whether their feet are on the ground of floating just above it.

I am honoured daily to see my love reflected in their eyes regardless of the difference

When do Smiley Faces really count?

Yesterday was a crappy day for us as a family. Crappy for Chase and just a day we don’t want to repeat.

The sun today rose and shone in through the condensation coated windows and made me realise there is a lot to smile about.

The roller coaster journey of CF that we found ourselves on back in 2001, has taken us to places we never dreamed of. Provided opportunities we’d never have imagined and created connections with people that are truly awe-inspiring.

Yesterday made me realise that although we often feel very alone in this journey with Chase, we aren’t.

There are people, many who were strangers that are now firm friends, friends who whether we have met or not, offer their support and inspiration just when its needed the most.

After being told many years ago that your children choose you for a reason, I was reminded yesterday, that Chase chose me as his mum for my pig headedness, my ability to create action and my focus on wanting to make it better – always.

Steve as Chase’s dad was chosen for his ability to see sense and to face certain realities and for his ability to make friendships with anyone anywhere – me, I struggle with that with a debilitating sense of shyness (I know who’d figure but it's true hence why i don't do networking so well!!)

So here we are in the position of taking care of a special young man. A young man who challenges the best in us and the worst in us.

But with the support of those around us in places we’ve never been, and to those around us who know us a bit more deeply, the journey continues with a new sense of wisdom and gratefulness.

Remember a purposefully placed smiley face on an email, a touch on the shoulder, or a comforting smile can change the way someone sees the world.

Thank you J  

Its not always smiles and High Fives :)

I read a poem the other day about the capacity of a mother’s love. I think it was one of those emails that go around and around again, but for some reason this time it seemed more poignant.

What is it about mothers that enable them to fight momentous fights just for the sake of their kids?

And what type of society does it suggest we live in when as a parent we have to continuously fight for understanding.

And can I admit that I am exhausted from all the battles?

Today saw an explosion from the depths of my despair. An explosion directed towards a school and education system that refuses to acknowledge their part in my child’s welfare.

·         He doesn’t come from a broken home

·         He doesn’t come from a back ground of poverty

·         He is well loved and well cared for

·         He isn’t spoilt and surely doesn’t get everything he wants

He isn’t recognised as being ‘At Risk’ because of the above and yet he is more vulnerable and more at risk than at any other time in his life.

We had to call the police today on our 9year old son and it broke my heart more than you could ever imagine. Even they acknowledged that if we cannot do something now, our son will face more serious consequences later on, at a time when as parents we won’t have the same ability to advocate for him.  

So we start a new battle. One for support, one for finding the necessary resources to help him find tools that arwill enable him to better manage the issues ahead of him.

After all isn’t that we mums do – we continue the fight regardless of how tired, frustrated, or alone we feel.

And I wouldn’t have it any other way.

Being a mum IS the most important job in the world.

‘Til death do us part, and beyond

So what do you do when your child asks when are they going to die?

Generally this comment is laughed off or perhaps some parents might even explain death. For me it was a question that slapped me in the full force right on the face.   

Chase is 9 nearly 10. He knows he has CF. Until recently, he didn’t know the implications beyond having a mickey button and being able to eat junk food.

But now he is beginning to get that he is different, a little different from the kids at school and from us.

When Chase asked me this week, as he has done before but probably not as seriously, I did what I always do – changed the subject.

There is this part of me that wants to be able to explain it sensibly but I can’t.

When Chase was first diagnosed and we understood what we were facing I did something that some would find morbid – stupid even. I planned Chase’s funeral. I chose the music, the where and the who. I planned who would carry Chase and where we would lay him to rest. Done, sorted and back in the recesses of my mind so I never had to think about it again allowing us to get on with living a full life.

So when Chase asks that question – "when am I going to die Mum?",  it hits me that in all likelihood I will have to take that suitcase off the mind shelf and open it one day.

and I damn well don’t want to.

I want Chase’s life to extend beyond mine, for him to travel, meet someone special, to have children maybe (IVF is a must for Chase). To get laughter lines like the ones he’s given me, to get grey hair like he’s given his dad and to be able to reflect on a life long lived.

Instead we are focusing on a trip to New York so he and I as a mum will have memories that will carry us through a shortened life time, when the times are tough and we both need to hang onto a shared memory. When times are good and we can laugh with each other.

But most of all we want him to experience life right now – not wait until he is older – because living with CF means that ‘till death do us part may be sooner than we’d like.  

:) Donna

PS: Aerosmith "I don't want to Miss a thing, and Celine Dion 'Fly' are 2 songs filed away for Chase.

So How Special is Chase Really?

So here we are coming to the end of another school holiday. This one was a little different; Chase wasn’t in hospital for the entire break!

Its great to have some time having fun as a family. This break the family got a rabbit. Not just any rabbit… no a HUGE WHITE ALBINO GIANT FLEMISH.

So far we have learnt that rabbits have big claws and sharp teeth. They like feijoas and lighting cables. They don’t mind the cat – the cat does not feel the same way at all

And Chase is in love… again!  Chosen name “Snow Buddy”. I sweetly suggested monster mouth but Chase wasn’t having it.

Said Rabbit is currently in hutch having Time Out for biting hole in couch.

And talking of Time Out, I remember when Chase was young and as all kids do, was into mischief. There was one particular occasion that he just went a tad too far and got sent to his room with a flea in his ear if you know what I mean.

Friends were staying at the time and one of them asked “How can you do that?” I thought I was about to be dobbed into the anti smacking brigade.

My dear friend was so upset that I could even contemplate telling Chase off let alone give him what for.

I had to calm her down and then explain that yes Chase is special. He has some special needs with his health and his learning. He has issues around his physical stature and not having a lot of core body strength or hands which in turn has created some issues with his ability to write and even ride a bike.

However, Chase is a boy. He is a child that requires support as well as guidelines. He needs boundaries to grow into and then expand upon. He needs love and loving discipline – and by discipline I mean what is appropriate for his age. Time Out was fine at 2, not so much at 9. Now it’s TV removal that has an impact.

My friend calmed down eventually and after I thought to myself about how we as parents treat Chase, we try to just be us. We make mistakes, we learn.

We advocate for him with his health professionals and we fight for and with him for good schooling. We work hard to help him accomplish small things and the bigger things.

We have expectations that he will rise above himself and never have to live on a benefit. We set the benchmark and work hard to show him anything can be achieved if you believe strongly enough and we love.

But I guess this can be said about most parents and their children. Chase is special – but Chase isn’t special either!

Hospital stays from a Mums perspective

Somebody kindly asked me what we needed help with while Chase was in hospital. Although I really thought about it – there was nothing I could think of!

For nearly 10 years Waikato Hospital and specifically Ward 53 have become a second home. We kind of just fit in when we arrive and get on with it.

Typically we know that Chase is going downhill so we kick into action:

·         I spend the weekend before going into hospital cooking up a storm and getting frozen meals prepared so we don’t have to eat A) takeaways or B) spend crazy money at the Café!

·         Steve mows the lawns and tidies up around the house so he doesn’t have to worry about that.

·         I also collect old toys, books & activities that I regularly ‘hide’ under the house and bring them out so the boys have new toys to play with while hanging out together in Chase’s room.

·         I pack coffee cups and a picnic pack. You may be surprised at how eating with real knives and forks, drinking a coffee from a real cup goes a long way into making it feel normal!

Then we set the button to automatic!

·         5am starts – Usually Dad heads to hospital to get there by half 6 to get Chase sorted for the morning, breakfast, clothes, the usual!

·         After I start work at 6am and finish work at 11am, then Joshua and I head up to hang out with Chase for lunch and the afternoon.

·         Now that they no longer have the playroom open in the afternoons it does get boring but we play games so that helps.

·         We try and have dinner together each night unless Steve is away for work. Then by 7pm Chase is showered, on the pump and tucked in with a huge hug from all of us. We go home missing him as soon as we walk out the hsopital door!

Then when Chase comes home – we breathe again, and just get back into the groove of keeping Chase healthy by supporting him and helping him achieve his little goals along with the BIG ones like his New York White Christmas and spending as little time as possible in hospital.

So hug your children, hug your friends and hug yourself – consider it Chase’s gift!

 From Chases Mum :)

5 days to go for Chase until he comes home YAYYY!!

Watch Out New York - Chase is heading your way!!

And we couldn’t have got started without YOU – The Fabulous FB and Online Community.

Some of you know Chase well; others met only in passing.  Others we may never meet but you are all DAMN FABULOUS for helping us get to this stage. With over 345 friends now Chase is on the way to finding some of the best fund raising ideas EVER!

We’ve had amazing ideas flow in such as:

• Auctions, (one bottle of wine signed by numerous MP’s already offered!)
• Pot luck dinners (where groups of 10 people take a dish & $10 and have a great & cheap night out!)
•   Drive In Movie (a community activity possibly best saved for Summer!)
• Brick Wall fund raising (already launched by Chase himself is up and running with great shots already loaded)
• Get schools having mufti days or sausage sizzles
• .50c for every 100gms of chocolate eaten (I personally love this one!!)
•   Make Chase the “World Ambassador for Joy” 
•  Have a skate day at Wrong Skate in Hamilton
• Have a cocktail evening for the young fashionable FB community!

We have one business sponsor who is sponsoring Chase $100 per month for 12 months. For this Chase has to work – it might be washing cars at the office one month or having his photo taken for marketing purposes! 9 more businesses and we'll be able to book the accomodation early saving some money!

Involving Chase at every step of the journey is crucial for me as his mum. And when he is in hospital like now, he’ll be focused on doing his rigorous daily physio to keep his lungs healthy. After all part of Chase’s job is to keep well, a bit tougher as we head into winter.

So as we head into the journey ahead of us, we’ll be updating this Blog as to where Chase is at and letting people know of any events coming up.

So add this BLOG to your favs and try and catch up with us soon!

HUGS & even more HUGS! :)

Lets Get Chase to New York 2012 - the beginning

This Journey was launched as a direct response to NZ's medication authority Pharmac imposing costs on Chase’s over night feeds and supplement feeding.

Chase at nearly 10 years weighs a paltry 22kgs.  Average weight for 10 yr old boys is 32kgs. The battle to gain weight is constant and sometimes down right exhausting for all of us, but we do it so we can have Chase for ever!!

Chase puts up with overnight feeding through a tube into his stomach. He doesn’t sleep so well and often tangles himself up in the tubing. We don’t sleep so well as we have to wake him every 2 hours to give him enzymes.

That’s 3 cans a night 7 nights a week. Now at $2.12 per can that’s $44 a week… and that doesn’t include the milk supplement Chase drinks during the day.

So the $50 a week we were saving for Chase’s trip just got canned.

And you know us Mums; we can be galvanized into action very quickly when someone starts messing with our kids!

·         1^st action – start lobbying the powers that be and email MP’s and Pharmac stating the facts!

·         2^nd action – find another way to fund the trip in case our lobbying didn’t work – hence the launch of “Let’s get Chase to New York 2012”

As parents, Steve & I will be funding most of Chase’s trip via pocket money and our own savings. In fact we’re considering selling the house and moving to put some funds aside if required.

But for today we are looking for help from not just friends and family, but from others who want to help one young man acheive his dream before it gets too hard for him to enjoy. Chase's job is to get well. He currently has Pneumonia and is off to hospital to spend his school hols trying to get well before next term comes around. But he's hanging onto his dream and focussed on the big goal!

So we welcome you to join us on this journey of inspiration, magic and hope.

Chase's mum, Donna