10/4/14

 

Hello there!  With only 3 days to the Run for the Kids, our family have been so overwhelmed with support and encouragement.  Attached is a photo that was taken this week of our kids at the hospital - we've had routine appointments all week.  Today was a great day as we were asked to participate in a Mazda/Herald Sun Run for the Kids media activity at the Nth Melb Football Club.  The 4yr old twins - Bonnie and Chase were asked to take part in an Easter egg hunt in the back of a Mazda ute, promoting Mazda as proud sponsors of the Run for the Kids.  There was lots of sand and chocolate everywhere - the kids had wonderful time! Did you spot them in the sports news tonight ?? :)  Thankyou to Jump Media for organising this.  Also - thankyou to Go Fundraise for letting us share our story on the Run For the Kids facebook page - join their page and keep an eye out tomorrow for the kids faces on there!!  You might even get to see them in the Herald Sun over the coming days....

 

Our fundraising has been amazing - we have raised $4145 with hopefully more donations to come in the coming days.  You have all been so generous - we are all doing it for the kids.  For those who have yet to donate, please do so.  A big thanks goes out to the Finlayson family, Cathy Fowler, Frost family, Corporate Protective Solutions, Baker family, Cumberland family, Beaton family, Poulter & Hopper family, the kids at UPPS & Dancexclusive families for their lolly guessing donations, Cullinan family, Belinda, Jane & Sue and Schiller family.  Your donations are heart warming.  It makes all these writing of blogs, organising fundraising activities, sharing stories and spreading the word around really worthwhile when all our family see the tally rise :)

 

Please take a moment to think of all the sick kids and those who are in need for our RCH.  A special mention to our little mate Campbell York (see story in last blog below) who has taken ill once again and was admitted yesterday for more treatment.  Get well soon Campbell - we are all right behind you.

 

As we count down the last few days, I say thankyou from the bottom of my heart.  Love Katia Fowler & crew xx

 

 

 

1/4/14

 

Hello Everyone!  We have had an awesome couple of weeks of fundraising!  The weekend just gone we held BBQ fundraiser with the local new butcher in town.  The butcher had kindly donated the burgers. The donation tin is heavy - full of coins and notes to count!!! Everyone was so generous - it was wonderful letting everyone know what we were doing to help - and getting such encourgement and support from the community.  We are organising a few "guess the lollies in the jar" competitions during the week at local schools and the kids dance school.  The lollies were donated from Nestle Broadford. To date we have raised $2565 - amazing and there is only 12 days left until the Run for the Kids.  A big thankyou to those who have donated since the last blog - Glen Morris, Dowse Family, Brigitta, Suzannah, Edmonds Family, Breen Family, Barber Family, Bova Family, Linda, Treacy Family, Ferguson Family, Mc Intosh Family, Drofenik Family, Cliff Family, Gilchrist Family, Dancexclusive, Humphries Family, Barry & Julie, Bonner Family, Rode Family, Twigden Family, and those who threw in all their loose change at our BBQ on the weekend.

 

This year I have not only told our story on this blog, but shared Campbell York's story also.  Please read below another local family who we have met - our sons Bailey and Campbell play football with one of their son's - Zac (10yrs old).  Both Zac and Dylan are patients of the RCH......

 

DYLAN & ZACHARY'S STORY

 

In 2011 my husband and I welcomed a new bundle of joy into our family.  Our second child and a little brother for our eldest son Zac who was very excited at the prospect of being a big brother.  Dylan's birth was fairly normal with the only issue the need for a paediatric doctor as he was struggling a bit immediately after his birth.  He spent nearly all his time over the next few days in hospital asleep and needing to be woken up for feeds.

 

Having had an older child and comparing them both as little babies they were both very different and we sensed that this sleeping and feeding pattern wasn't right and that something was wrong.  We questioned doctors about this and were told that it was just Dylan's way of adjusting to life on the outside.

 

We took him home after a few days only to find that he was still showing the feeding issues and wouldn't wake up.  His body was very floppy and he never cried.  After a visit at home from a midwife it was decided that we had to take him back to hospital.  After seeding a group of doctors explaining everything that was going on they started some tests straight away and decided to keep him in hospital until further notice.  During this time Dylan was fed through a nasal gastric tube and we had to try and train him to drink from a bottle when we could get him to wake up.

 

After 3 weeks of testing and lots of waiting Dylan was diagnosed with a rare genetic condition called Prader - Willi Syndrome.  Prader Willi Syndrome is a genetic condition that effects the 15th chromosome in a person.  The effects of this syndrome are very low muscle tone, low IQ, learning disabilities, emotion issues(anger) and developmental issues especially during puberty.  Most kids born with PWS have undescended testicles and can suffer from crossed eyes.  The biggest effect the syndrome has is it causes a constant hunger in the effected person.  This hunger can't be suppressed and causes big weight gains and even death if not constanly monitored by a carer.  The effected person never has the feeling of being full as the brain doesn't recognise it.  These children also show signs of being OCD and can develop autistic characteristics.  Dylan suffers from all theses symptoms and because of this requires constant care and supervision.

 

Dylan is now 3 years old and doing fantastic.  He is part of an Early Intervention program at Specialist Children Services and his key worker is a physio who has been fantasic.  With lots of hard work and encouragement Dylan started to walk about 6 months ago which was very exciting! He still doesn't talk at all and is in the process of learning to sign.  He is aided in his walking with AFO's and having previously worn glasses now wears an eye patch to try and rectify his crossed eye.  Dylan attends the Prader - Willi clinic at the RCH every 3 months, where he sees his development paediatrican and other specalists.

 

He has had numerous operations to try and fix his eyes and to try and bring his testicles down.  He has spent many nights in the RCH during these operations and from being sick.  With low muscle tone his body struggles when he is unwell.

 

Dylan attends childcare two days a week and loves it.  His favourite activities would have to be anything that requires making a big mess. Water play, sandpit, painting, playdough, even playing in the dirt are his favourites!  Dylan also loves music and singing.  Childcare also gives Dylan a chance to be with children of his own age and hopefully over time can learn and pick up things from the other children.

 

Dylan along with Zac are the light of our lives.  This little fella keeps us on our toes and can be quite demanding at times.  All of us have adjusted to the issues he has and faces as his life goes on, he is adorable, makes us laugh and we couldn't imagine our lives without him.

 

In 2012, just before Dylan's first birhtday, our other son Zac(8yrs) over a 3 -4 week period started drinking excessive amounts of water and constanly going to the toilet, even during the night.  After a visit to the doctor it was confirmed Zac had Juvenile Type 1 Diabetes.  This came as a shock to us as there was no history in the family of Type 1.  Zac was admitted to the Roal Children's Hospital for 6 days.  In these 6 days together with us had intensive education and had to learn everything we could about Diabetes - it was a lot of informantion for us all to take in.  Zac being a very mature and switched on 8 year old took this news very well and took it in all in his stride.  Zac was even giving himself his needles before leaving hospital which was fantastic.  Zac now has 4 needles a day and constantly has to monitor his blood sugar levels.  Zac has 3 monthly visits at RCH with his doctor.

 

Zac loves his sport and having diabetes hasn't stopped him at all.  Last year Zac joined the Wallan Football Club in the under 10s.  Zac enjoyed and loved the whole season.  His greatest achievement was being appointed captain for the finals games and then winning the Best and Fairest at presentation.  It was a very proud moment for both of us.

 

Over the Christmas holidays this year Zac was lucky enough to be offered a spot to go on Diabetes Camp to Anglesea that was run through Diabetes Australia.  Zac went along to the camp with his friend Bailey Fowler and they had a fantastic time.  He enjoyed all activites and came home with lots to talk about.  This was great for Zac as he was around other children that all have diabetes and was able to learm from them and bounce ideas off them.

 

Our children are very unique and special to us.  They have their issues in life which we deal with on a daily basis.  In many ways we wouldn't change a thing.....Melissa :)

 

 

I have uploaded a photo of Zac and Dylan - another 2 children who require regular care from the RCH.  Another 2 children who need your support.  Please donate, it can be large or small - every bit does add up.  Help the kids out!!  All donations $2 and over are tax deductable.

 

Love Katia Fowler & her running crew - Chelsea, Bailey, Campbell, Beau, Bonnie & Chase .... and of course Robbie!

 

 

 

 

25/3/2014 - Master Campbell recovering in hospital after another recent episode. x

20/3/14 - A new photo uploaded of Campbell at Kindergarten beside our Miss Bonnie.

 

16/3/14

 

Hello All

 

Here's to another week of fundraising and spreading the word about the Run for the Kids.  I managed to enter all the family this week, all 8 of us, so we are in the system..... ready!  A little different for us this year as generally Robbie & myself run the long 15km course.  However, young Beau(7yrs) has just recently been accepted to go to Diabetes camp in Warburton .... and with a clash of events, check in is on the same morning as the run!  AAARRRGGG!!  So we had a family team meeting and the kids were still mighty keen to run.  It was decided rather than myself running the event alone, whilst Robbie takes Beau to camp, we would all run the 5.5km course(which starts a little earlier) and then scoot off immediately to Warburton for camp.  I am sure with 6 kids under 12 years of age, including twin 4 year olds.....a piggy back along some of the course will be in order!!

 

So we have officially started training.  We all headed out for a 5-6 km walk the other day.  The younger ones struggled a bit in the heat, and we were happy to end up back home in the pool!  I managed a couple of runs also since my last post.  Decided to still train for the long course, even though I have entered in the 5.5km.  A bit crazy, but always up for a challenge.  I ran 8km on Thursday.... the most I had run in 5 months.  Couldn't have done any more, but aiming to run 10 km next week..... Hmmmm..... now that's the plan!!

 

I just want to thank everyone who has already jumped on the fundraising bandwagon.  We have to date $1200.... with still 4 weeks to go.  Thanks to Walter family, Mum & Dad, Collette family, Simner family, Steve Bell, Skora family, Janet Hadzi-Popovic, Gary & Margo, Bill Hunt, Hanson family, Hannam family, Jack Vukoja, Aunty Sandra & Uncle Graeme, Frampton family, Di Mitchell, and the Cullen family for making this tally rise.  An anonymous amount was also posted, thankyou for your donation.... you know who you are and we are very grateful.  I also want to say thanks to all the support through return emails we have received, along with those who have stopped us in the street to commend what we are doing.  Your words of encouragement and the reason behind this special event is why we do this.

 

There are many families we know who have had their own challenges in life, as I mention in particular a special little boy by the name of Campbell York(4yrs).  He's a local boy who goes to kindergarten with Bonnie & Chase.  I asked his mum, Kylie, during the week if I could spread his story to you all.  Kylie and Paul have 3 boys and do a terrific job with the challenges their family have.  Dear Campbell has just spent a stint in hospital over the last couple of weeks with another hiccup.....Please read Campbell's story.......

 

Campbell Harrison York, born 28th April 2009

 

Cam was born healthy but at 2 days old he started to yellow.  That's normal for newborns, we were told,  at 1 week old we went back and got some blood tests, that's all normal we were again told so off we went!  At 2 weeks old we asked again for blood to be taken only to be told that's probably breast milk jaundice and to forget about it but that was hard as he was getting more yellow by the day.  "Put him in sunlight, he's just fine, liik how big he's getting"  Those comments haunt me to this day as deep down I knew something was wrong but I took to the professionals word for it and carriend on.  At 8 weeks old, Campbell had quite a sun tan and we all giggled because it actually looked really good, but a sun tan was harbouring quite a different stroy and one of the main symptoms in a disease I'd never heard of! Campbell we were told after we requested a specialist paediatrician to look at our baby was likely to have a disease called Biliary Atresia!  To help find out if "BA" was what was wrong with Campbell, we needed to get an ultrasound, that Friday afternoon is when our lives turned around.

 

Dr. Luke Sammaritino, our family paediatrican and now very close family friend, viewed the scans and sent us straight to the Royal Children's Hospital.  Campbell's blood had to be taken, at 8 weeks of age that is a difficuilt thing to watch, the results showed what the doctors suspected, very high Bilirubin and stress on the tiny liver.  The diagnosis of BA had to be confirmend via biopsy of the liver so 3 days after inially being told by Dr.Luke we may have a very sick child was one of the first times I let surgeons take my baby, the first of many times within Campbell's life.

 

Biliary Atresia is a life threatening disease affecting 1 in 20, 000 births.  The bile ducts within Campbell's liver had disintergrated, the bile was "trapped" wiithin his liver.  He required lifesaving surgery immediately!  The surgery called a "Kasai" proceedure where the surgeon uses 20cm of the small intestine to act as his bile duct was performed on 9 week old Campbell with only a 25% chance of being fully successful and his liver having drainage.  The operation took 7 hours to complete, was not successful for 3 months and then @ week 15 just like a miracle it began to drain bile!  Campbell is one of the lucky children with this disease that hasn't required a transplant before/around the age of 1 but getting a new liver is inevitable for him to survive so we as a family are quite outspoken now for organ donation and supporting its plight!!  Almost 6 months of bile trapped in his liver had done its damage and Campbell now has severe liver cirrhosis, enlarged spleen, oesophageal varices, portal hypertension and many other symptoms that come with liver disease, he will require a liver transplant to survive.  In total Campbell has had over 20 admissions in the RCH, in excess of 10 procedures performed on him and 100's of blood draws and invasive proceeedures, he is such a strong and resilient little boy, he's my hero!!!!

 

Although his liver is very damaged he likes to do the normal things any 4 year old does like go to kinder and make friends!  Campbell is happy most of the time but is also an extremely sick little man which sometimes we have to remind ourselves of.  Professor Mark Oliver, Campbell's friend and one ofthe men that heped save Campbell's life is based at the Royal Children's Hospital so we are there as an inpatient whenever Campbell gets sick, but also as an outpatient monthly to watch and react with anything going on with him.  The gastroenterology team based at the hospital have plans set in place to care for Campbell, he is quite a unique child to BA with only around 8-10 new cases seen at RCH every year and each child is different than the other!  We are trying to help Campbell keep his own liver for as long as possible by keeping him healthy but we know that the day where we have to hand him over again for fight of his life could be just around the corner.  Please support The Royal Children's Hospital, it saved our sons life and you never know when you might need thier help!!!! We are forever in its debt!!!!....Kylie York.

 

I have posted a photo of baby Campbell before his operation. Trying to post more photos of Campbell, but atm it is not letting me!!  Will update soon.  Please share this link and get behind this awesome event. 

 

Doin' it for the kids... Love Katia Fowler & her little running clan xx

 

 

2/3/14

Hello All!

 

The Royal Children's Hospital is now part of our life.  Back when I first fundraised and ran the Run for the Kids in 2008, I knew how important this event was, but we had not used the hospital in any way.  It was only the following year in 2009 that our Bonnie entered the world.....only to turn ours upside down.  She now has a developmental delay - due to seizures and uncertain events at birth.  She is now a regular patient at the RCH and visits Peadiatric, ENT, Audiology, Opthalmology, and Cardiology specialists.  Later in 2009 our 6 year old son Bailey was diagnosed with Type 1 Diabetes, and then 2 years later, our 4 year old son Beau was diagnosed with the same condition.  They too have regular diabetic appointments and also 24 hour support when they are sick.  Type 1 Diabetes is manageable, but they are now insulin dependant, and involves a daily life of insulin injections, routine healthy eating plans, and constant round the clock blood level testing.  But our family is happy and healthy.  Some families are not as lucky as us.

 

When I first conquered the then 14 km course in 2008, it was something a non-runner was very proud of.  In fact.....I was never really a "runner".  I classed myself as someone who ate healthy, and kept fit, but to initially run 2km without stopping actually nearly killed me!  It was never enjoyable to start with, I hated running in windy, cold, wet weather (I still do!!) .... but I got my husband Robbie on board over the years, and last year Robbie and I ran the long course, whilst my eldest 3 children Chelsea - 11, Bailey - 10, & Campbell - 9, participated in the 5.5 km short course.  Just last year alone, I raised over $8000, labelled as the highest individual fundraiser for 2013.  Amazing achievement and effort from you all! A bit of time spent from us, support from you all and a bit of pain getting out in the wind, rain or cold, pales in significance to what the dear kids at the RCH have to face each day.

 

6 weeks to train......6 weeks to fundraise.... and now as a mother of 6 young children, I plan to get them all out training and being part of this event this year.  All donations over $2 are tax deductable and you will be issued with a DGR receipt via email as soon as you make a donation.  If you could "like" and share my page and comment below so more people know about it - that would be fantastic!!  I look forward to sharing the next few weeks with you as our whole family start training and raise some real serious $$ !!  For those who want to run also, jump on the Run for the Kids website and enter - it really is an amazing morning to be a part of!  Thanks for your time and we will update you soon.  Love Katia Fowler