Posts tagged Jelly Baby Month

Suffer The Little Children…

I’m a little annoyed.

Maybe it’s all the shenanigans regarding governments and elections of recent times…It’s just made me recall all of the promises and deals that were made relating to an Insulin Pump Scheme that would be applicable for children with IDDM up to 18 years of age before the 2007 election.  

I was first contacted by JDRF Head Office last year, before our Federal Election. A small group of parents and I were asked to contact Mr Howard. Others were pleading with our Members of Parliament to take into consideration how many children with diabetes don’t have insulin pumps, and how desperately they needed them.

On International Diabetes Day,2007, Mr Howard historically announced that, if re-elected, he would provide $22 million to JDRF, to ensure that many children, and especially the ones who truly needed a pump, got one.

Despite our inital frenzy, at this stage, Mr Howard was lagging in the polls, so Kevin Rudd and team were our next target.

We rang Labor party hotlines, we wrote to Kevin personally, we even joined his Facebook Page. JDRF Youth Ambassadors followed him around and spoke of their need for an insulin pump program to combat their ailing health.

He knew that this was something that advocates and JDRF expected him to at least match, or maybe supercede the amount promised by Mister Howard.

So, Kevin Rudd became our new Prime Minister, and we said goodbye to our 22 million dollar promise.

Nothing was mentioned about Health, nor Childhood Diabetes in his victory speeches. I was silently worried.

He made grandiose promises to amend the public hospital debacles, and even establish doctor’s surgeries replaced by state-of-the-art medical centres, where you could see your doctor, as well as have all of your blood work, x rays, physio and dentistry taken care of in the same complex.

Australia nodded and agreed wholeheartedly. This was a man who cared for the little Aussie battlers.

However, in that election promise, there was no mention of a insulin pump grant.

In the meantime, Lance’s health took a turn for the worse. His endocrinologist spoke to me about the possiblity of getting an insulin pump.  When I bought up the possibility of obtaining one through the Insulin Pump Grant, he raised his eyebrows, stopped writing frantically, and shook his head. Hot, angry tears spilt down my face.

I began looking around and finally settled on a Medtronic pump.

The rep, Louise, and I gained a fantastic rapport. 

.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      totally  I really loved the way she communicated with me and understood how desperately a pump would be beneficial for Lance. I mentioned the insulin pump grant to her. She grimaced, and said something along the lines of, “If it does happen, it won’t be for years, and it wouldn’t be anywhere near the amount promised by Howard.” I sighed, disheartened, and continued listening.

 I put DAYS into writing letters to different influential people-some responded, but it all depended on the upcoming election. As soon as we knew that the Labor party were victorious, I began furiously writing to various Health Ministers, Members of Parliament, and King Pin himself, without one reply.

Suffer the little children..."

Suffer the little children...

Just before our annual budget was released in May, our very good friend, Gareth Eldershaw, (Gareth completed an interview for www.whydidtheinsulindie.com earlier this year), wrote to Arch Bevis,Federal Member for the Seat of Brisbane.

This is what Arch wrote in his comments regarding the budget results.

Firstly, he made reference to the letter that Gareth had written to him, complete with Jelly Baby Lapel Pin. (Budget night happens to coincide with Jelly Baby Month, so we make it a point that each MP is sent a pin and request that they wear it on their lapel on the night that has the Nation at a standstill.)

“May is a special month for JDRF as we try to make the community more aware of Type 1. As you know the jelly baby is a sort of motto that represents a vital aid to help us recover from a “hypo” when our glucose levels are too low. There’s a little blue guy in the envelope that I’d like to give you and ask you to wear in May and especially on Budget night.”

I can tell Gareth that I am wearing his little blue guy on my lapel, as I did last night during the budget. Gareth went on..

” We talked about the grant to fund the reimbursement of insulin pumps for kids under the age of 18. 3000 pumps for all these kids (over a 5-year period) would cost $35m. It’s a lot of money I know, but you know how much it will save the government in the future? Of course it will make life a bit more bearable (and safe too) if kids can use insulin pumps.”

I was very pleased to have been able to ring Gareth up today and say that in last night’s budget we made a step in that direction. I do not pretend that we have gone as far as we need to. I want to see the opportunity to benefit from an insulin pump—and not everybody with diabetes is suited to an insulin pump—be made available to all. But I do applaud the Minister for Health and Ageing, Nicola Roxon, for her efforts in recent times in ensuring that the budget includes a provision that will see about 700 young Australians gain access to an insulin pump. I look forward to continuing to work inside government now rather than from the opposition benches to try to have that program extended.

The grand result?? JDRF were given $5.5 million, to be dispensed over three years, to provide insulin pumps for 700 children.

After much planning and deliberating, JDRF will begin accepting applications for contributions towards the purchase of an insulin pump. It will be based on a financial means test, and the most that can be received per child is $2500. Families without health insurance can begin applying for insulin pumps for their children in November.

So, with the average insulin pump costing $6000, (notice, I say average ), and with approximately 1.7 million dollars provided each year, it won’t take long before all of the money is dispensed. If you are a suitable candidate for the $2500, what happens then? How do you get the rest of the money? Fundraising is about the only real option,and we all know how difficult that is.

I’m really not trying to look a gift horse in the mouth.

I’m so grateful that we were acknowledged at all, the heart and soul of some 50 parents went into sharing their children’s private stories regarding life without an insulin pump. I’m sure PLENTY of other charities tried their hardest to get a financial boost without succeeding, so I really don’t want to appear like I’m complaining or ungrateful.

I guess it just smarts a little that we could have had 22 million dollars.

It hurts to think that some families will qualify for the $2500, but will be totally stuck when it comes to raising the rest. Not to mention those who receive $750-I mean, what happens there?

  • Knowing JDRF Australia, they may have some amazing fund raising venture up their sleeve, but in all truthfulness, does it leave families any better off than before this money was offered? Personally, if I hadn’t have paid for Lance’s pump outright, and I knew that there was NO way I could afford to pay for the outstanding amount, I think (and only if Lance’s health was in excellent shape), that I would forfeit the opportunity. JDRF staff are going to have to make some really difficult decisions without being biased to families they know well and adore.

 Vote for whomever will give you a better Health Care System, America!

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My Jelly Baby Hero.

In this post, I wanted to write about my favourite Uncle Dan

\My Mum did an interview on ABC South East Queensland radio on Friday over the phone. I watched her and listened to her. She explained to everybody that was listening how important the Jelly Baby is to a person with Type 1 Diabetes. (Even my Pop was listening at his home and he was so shocked to hear his daughter talking on the radio!!!)

The lady that interviewed Mum said that I had become the “Face of Diabetes” in our city!!! This means that I can help people with Diabetes who are too shy, sad or sick by raising money for  medicines and better equipment, and giving them hope by promising that I am going to try my hardest to help scientists by giving them money that I raise, and educating politicians about what we have to go through every single day.

Kevin Rudd is the Prime Minister of Australia.

I saw him on the news recently on holiday in China.

People with Diabetes can go on holidays to China, but they can’t leave their Diabetes at home.

It is with you for life.

When I go on holiday, my Diabetes supplies and emergency kit is bigger than my luggage. It’s more important too, a thousand times more important, in fact.

It takes up so much room and time no matter where you go or what you do.

I think that sometimes people forget that.

I would like to sit down with Kevin Rudd and tell him about kids with Type 1 Diabetes and what they go through.

(Oh, and even though I know this man will NEVER read this because he was a stranger, but I just wanted to say, that when you were talking to my Mum and me about Type 1 Diabetes, and you told my Mum that she needed to “toughen me up with a good few wallops and that would see me better in no time,” you made me so mad.  Sad at the same time as well.)

(I thought my Mum was going to chase you she was so furious.)

We sat down on a bench together and we were angry for a few minutes, and then we laughed at how silly you were to think that hitting or punishing someone would make their Diabetes go away.

When I come to think of it, it’s the funniest concept I’ve ever heard!

\Then there are the people like my Uncle Dan. He is the type of man who would help anyone with an illness, even though he isn’t well himself. He helps charities and uses his own free time. He lives in Sydney and goes to University there. He would talk to anyone who needed help. He has a heart that is so big!  He is a member of JDRF, and he always emails us if he has heard any new exciting information about a cure. ( He is my Mum’s Info Tech Guru and brother. He makes my Mum laugh a lot, and sometimes when she has been looking after me all day when I have had a severe hypo, I don’t hear her laugh at all. If Mum talks to Uncle Dan though, her spirit comes alive again. He knows a LOT about computers!!!  He would do anything to see me free from Type 1 Diabetes. ( I would do anything to see him free from his pain too.)

 I know how much he really does love me now, because he sat down and actually made out a donation for me to go towards Jelly Baby Month. That was one of the most special things anyone has ever done for me. I will remember that when I am an old man; how my Uncle Dan helped out my charity, for me.

If every person with Type 1 Diabetes gave $1, we would already have over $140 000. Scientists and researchers could do so much with that!!! Donations don’t need to be big. Even $1 is one dollar closer to helping buy some important equipment.

I love you Uncle Dan. Last year, JDRF sent me a certificate that said that I was a Jelly Baby Hero.

This year, I am passing the title onto you.

Note from Kate:

If you are not in Australia, or you like to do your shopping online, JDRF have an online store that displays all of the merchandise that is available during Jelly Baby Month.  There is nothing over $10 in value, however there are some items that would make terrific gifts or even stocking fillers for Christmas time. (Any purchase over $2 is tax deductible.) The funds from any purchase made goes directly to JDRF Australia, who offer the best Diabetes research and support for children like Lance, and the tens of thousands of fellow sufferers who live with Type 1 Diabetes in Australia.

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May Is JellyBaby Month-Help Us Raise A Million Dollars For The Best Diabetes Research!!

It’s that time of year again!!!

Each May of every year, JDRF Australia and the Type 1 Community celebrates Jelly Baby Month.

The humble Jelly Baby has become quite the unsung hero, even pulling Lance out of a severe early morning hypo at 7am this morning!!! (8 Jellybabies later, and I could gradually see my son returning from the brink of unconsiousness.)

Every year, thousands of JDRF staff, Youth Ambassadors, JDRF Advocates, volunteers and many other generous souls go doorknocking, approach hospitals, businesses, passersby, friends and family, selling packets of Jelly Babies, pens, keyrings, teddybears-all baring the simple but poignant message:

Jelly Babies Save Lives.

Last year, almost $858 000 was raised in the month of May. This year, for the tenth anniversary of Jelly Baby Month, JDRF is aiming for $1 million, that would be donated directly to finding a cure!!!

How can YOU help??? If you shop at any of the 700 Woolworths/Safeways stores within Australia, you will notice at the checkouts colourful boxes, jam packed with the “Jelly Baby” featured everywhere, as well as groovy, fun examples of colourful, exciting merchandise. All products are $10 or less, and anything over $2 is tax deductible.

Amcal Chemists,Medibank Private and Wendy’s also help us out by selling our merchandise.

Who do you contact if you want to make a donation on behalf of a loved one with Type 1 Diabetes???

Juvenile Diabetes Research Foundation — All States (Australia)
Tel 1300 363 126
Email
info@jdrf.org.au

(If you would like to support make a donation exclusively in Lance’s name, please contact our Queensland JDRF Government Programs Manager:)

Queensland - Georgina Duncan on (07) 3221 1400 or gduncan@jdrf.org.au

If every person with Type 1 Diabetes donated $1, we would instantly have over $140 000. ( In 2007, Lance and I raised $2500 on our own, simply by doorknocking from house-to house in our neighbourhood!!!!!)

This is a fantastic project to get involved in. If your children receive pocket money, how about suggesting that they contribute just $2 during JellyBaby Month, explaining that people with Type 1 Diabetes must have numerous needles AND fingerpricks, in order to survive?

Jelly babies save lives – and so can you!

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The Unspoken Words Between Carers

In 2006, Lance was a shadow of the robust, handsome wordsmith that he is today. He was nominated by an anonymous member of the community to receive a gold medal and certificate at the annual Lion’s Club Children Of Courage Awards.

Courage and Kids

This year, he was invited back to receive a Bravery award as he was acknowledged by members of the Lions Club for the awareness he has created and the passionate stance of making others aware of the differences between Type 1 and Type 2 Diabetes since receiving that first award as a 5 year old.

We took our places, whilst I read the procedings for the afternoon. As my eyes ram down the page, I was temporarily stuck on one name-MINE!! My name, with Special Guest Speaker written in bold print beside it. I had agreed to bring Lance’s assistance dog, and for him to receive his certificate, but NO mention had been made of  an impromptu speech!!! I looked around for the Secretary in desperation, hoping that I could catch his eye and ask him what exactly he wanted me to “guest speak” about. Alas, he wasn’t there, and procedings were about to commence.

I have spoken in public on more occasions than I care to remember. In fact, I LOVE getting on my soapbox and speaking about Type 1 Diabetes and the misconceptions surrounding it! I have performed the lead role in plays, musicals, performed and conducted in concerts in front of thousands of people and taught a variety of ages in a variety of subjects. I am lucky enough not to experience nervous moments, especially when speaking about something as passionate to me as Type 1 Diabetes and Lance.

However, I had been caught unawares…I quickly grabbed my Dad’s obligatory JDRF pen from his pocket, and began scribbling some notes on my program, quietly seething as the seconds ticked away.

The presentation had begun. There were approximately 10 recipients, all who suffered from shocking disabilities that caused much hardship to their families, and from which there was no escape. Yet every little face was dancing with bright, proud eyes and beaming smiles.

 The boy in front of me was my own secret hero. At the age of 5, he found his mother unconscious in her bed. Except she wasn’t unconscious. She was in a Diabetic Coma. He had been taught by his Mum how to call 000 in an emergency ( for American readers, 000 is our equivilent to 911,) and remarkably, he recognised that his Mum was  not just sleeping, and called the ambulance immediately, undoubtedly saving her life.

I clapped with fierce pride as he received his well deserved medal and certificate. I listened to the adversities that the other children had been through. I recognised the exhausted, empty eyes of their parents, and their lifeless expressions. I felt as though I was with like-minded people, who understood the trials of caring for a child and a life threatening medical condition, day in, day out.

Then I was introduced to speak about who knows what.

There was thunderous applause as I made my way to the podium.

Oh boy, what am I doing up here!!!! I’m gonna have to bluff my way through this one…

A few camera flashes went off, and I gazed at the sea of faces, all waiting in anticipation for me to speak.

I saw Lance, standing up in the corner, giving me the “thumbs  up” sign. He was as proud as punch.

I began in a clear tone, ensuring that I was projecting my voice to the back of the room.

“2008 marks my only son’s 6th year living with Type 1 Diabetes. Many people think that a change of diet can irradicate this metabolic disorder, or that insulin is a cure. It’s not. Insulin certainly keeps people who suffer from Diabetes alive, but it must be administered by injection, several times a day. Therefore, 2008 equates to over 6000 injections in my son’s short life.”

( I have written this speech many, many times. I didn’t need notes-it was just a matter of recalling out loud the many letters that I have written to politicians in my time.)

“Without a cure, my son faces blindness or irreversible eye problems, kidney disease, stroke, early heart disease or even limb amputation. I work tirelessly every year to ensure that his twenty-first birthday present sees him about to embark on an overseas trip with friends, and celebrating his newly discovered independence. I have a deep passion to ensure that potential complications that arise from Type 1 Diabetes are halted, and I want the same for the 5 children who will be diagnosed today within Queensland….”

I stopped, and the room was silent. My throat was tight. Tears were spilling down my face,staining my notes that were covered in scrawl.. What was happening? I continued to try and speak, however each word was choked with grief. I felt my chin begin to tremble, and I soon began sobbing. I was inconsolable within seconds.

The silence in the room was deafening. I held up my hand, trying to give a sign to the audience that I was trying desperately to compose myself. I turned my head and buried it in my long hair, and the sobs soon became audible. I didn’t even care who heard them. There was another prolonged moment of silence. Out of the corner of my eye, I saw my father stand up from his seat, hurriedly approaching me. He tried to take my notes away from me, and attempted to take over. I pulled them back, and smiled at him through my tears. He embraced me warmly, and it seemed to recharge me. I felt as though I owed Lance to finish what I started. My Dad stood with me as I recommenced-I was annoyed that my voice was still quivering.

“Lance received this award when he was 5 years old. It gave him a tremendous amount of self-esteem and he recognised for the first time that he was a child that possessed an extraordinary amount of courage. He has since appeared on National News, appeared in various articles in many publications, and has spoken live on radio in an attempt to raise awareness about this often misunderstood condition.”

(I tossed my hair with confidence, and cleared my throat as an indication that I had fully regained composure.)

I went on to mention how Lance had visited Parliament House in Canberra, Australia to speak directly with Hon Ian Macfarlane MP. He asked him face to face if he would promise to remember him when the Federal Governnent  allocates funding at budget time to medical research. He did promise to remember Lance. My little boy was then fortunate enough to listen to our previous Prime Minister speak about the cruel nature of Type 1 Diabetes, and how much respect he had for the parents of young children living with this condition. Lance then had a photo with him. It was a moment that spoke volumes.

I proudly announced that through sheer determination and patience, that my son, under my supervision, had doorknocked, and raised over $2000 for JDRF Australia in May 2007, which is National Jelly Baby Month. In total, through my letter writing, and from my son recounting his story to various members of the community, he has raised over $5500, which goes directly to finding a cure, through developing trials, and funding groundbreaking research that enables scientists to unlock the mystery of why Type 1 Diabetes is becoming the silent epidemic.

I then introduced Chino, Lance’s Assistance Dog, who was fast asleep in the sun that was streaming through the window. People were fascinated about how Chino allieviated Lance’s distress during hypoglycaemic attacks.

At last, I concluded. I looked up, and saw many red noses and tear stained faces. Parents, children, Lions Club members alike, had all felt the pain that had inconveniently decided to emerge at such an inappropriate occasion. The whole time, my beautiful son stood beaming at me, willing me on by continuing his thumbs up sign, this time with both hands. As I took my place, he wrapped his arms around my neck,and planted a kiss on my cheek, which set off the row behind us. There was much snortling and blowing into tissues.

After the procedings were over, there was an afternoon tea. Lance was less than impressed with a plate of just fruit, as everything that looked delectable would have been full of sugar, but more importantly, made with wheat flour.

I spoke to many people who commended me on my speech despite the unexpected mini-breakdown. A lady came and told me about her mother, who has had Type 1 Diabetes for over 40 years, and how she had no complications, and led a full, happy life. I nodded politely, declining to tell her about how difficult these new developments have made our life. (You will never know just how much food contains gluten or wheat until you spend an hour in the supermarket reading labels…)

The highlight of my afternoon was speaking to the young hero who saved his Mum from a possible fatality. He is now in his first year of high school, however, he remembers that day as if it happened yesterday. He told me that he can look at his Mum, and know immediately if she is hypo, he virtually matches the glucometer everytime. Tragically, he told me that  both of his mother’s kidneys are failing, and that she is quite unwell. His grandmother intervened at this point and suggested her grandson get something to eat. He was hesistant to leave, but soon found Lance. ( I was touched yet saddened to see him out of the corner of my eye feeling Lance’s skin for clamminess, and suggesting that he should have a drink after such a long ceremony.) His grandmother told me that it was exactly 21 years after diagnosis when her daughter’s kidneys began to show abnormal results in her 3 monthly urine tests. She has deteriorated very quickly, and for a brief moment whilst she was speaking, I felt like I recognised this woman. I studied her face, and suddenly realised that she was me, only 30 years older. There was pain etched across her face as she admitted that she no longer had control anymore over how Diabetes effected her daughter’s life, and in hushed tones, how things weren’t looking good for her; the doctors had told her that by the time a transplant was a possibility, that she would be long gone. I looked at her grandson, who had returned, and quickly changed the subject, changing the focus onto his newly aquired medal, again showering him with praise for his heroic deed. 

His grandmother shook my hand upon departing and she concluded with, “Yes, that Type 1 Diabetes is a beggar of a thing. The trouble that it has caused… I’ll pray that your son has some incredible breakthrough to look forward to. But yes, it’s just taken over, it will leave me without my daughter, and my grandson without a mother. It’s a hard life, Kate, and personally, I’ll be glad when it’s over, for her sake. There’s only so much that a person can go through, and she’s had more than her fair share of suffering.” Her voice trailed off, and she took her grandson’s hand, and told him how they were ready to leave.

As they walked out the door, the boy turned his head, and gave me a knowing smile. He and I had something in common, that was an unspoken secret . We are both carers of a loved one with Type 1 Diabetes. He had grown up, nursing his mother through hypoglycaemic attacks, and living the reclusive life of a carer. He was growing anxious to return home to his Mum, his medal and certificate were now secondary. He was more concerned for his mother’s wellbeing whilst he was gone. I knew exactly how he was feeling, no matter how wrong it was that a 13 year old cared for his mother on a full-time basis, I identified with him, as I find it difficult to enjoy myself after a certain amount of time away from Lance.  Horror scenarios begin to run through my head, and even though I berate myself for doing it, I will often ring up my parents and ask for a blood sugar number. So many times, he will be 5 or 6 mmol/L, and my father will reason that he is in fantastic spirits, and how there is nothing wrong with him. However, Lance knows that 5 or 6 mmol/L means drop everything and get something to eat.

I learnt a lot that day. I realised that people who care for or live with Diabetes speak and understand a silent language.

This post is dedicated tp my new 13 year old hero, who has not only saved his mother’s life once, but probably does it regularly by monitoring her blood sugar levels and treating hypos regularly, but without the recognition.  I’m not sure if he is aware that Diabetes will ultimately take his young mother from him soon, but his courage and unconditional love for her was so touching and a rare quality for a 13 year old to possess-I hope I find him again in my travels.

                                                                                          

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My Aunty Liz’s Birthday!

She’s pretty.

She’s kind.

She is never grumpy.

She has smart ideas.

She helps people with diabetes at work and at home.

She is married to James, and he has Type 1 Diabetes. Looking after it is like looking after a baby.

She has two “boys”, Aramis and Carbi.

She fights for peoples’ rights.

Mum and Aunty Liz are the creators of Project 365:Australia.

She can sniff out somone who is dishonest.

She and My Mum are best friends. They talk for hours. EVERY day.

(James and I have had to learn to be very patient.)

Together, they make a pretty impressive Diabetes Education Team.

They are getting letters from Parliamentarians all over the country.

They want to make a difference, and they are!

Aunty Lizzy doesn’t even have Diabetes. but, like my Mum, she would chase someone down the street to teach them about James’s diabetes, or how many needles I have to have.

It’s Aunty Lizzie’s Birthday tomorrow!!

It might be a little silly, but I made her a gluten-free cake tonight.

I even sung “Happy Birthday” with Mum. Aunty Lizzie couldn’t hear me though because she is in Tasmania.

Here is a slice of your cake, Auntie Lizzie. It is French Vanilla, with low fat whipped-cream and ‘Happy Birthday” on it. I sprinkled Gluten Free Icing Sugar on it, too. I made the ENTIRE thing all by myself!!!

(You can’t eat the green Jelly Baby though…I just put that on for decoration. People can buy them from JDRF Youth Ambassadors like me. They are badges, they represent HOPE for a cure.)

Happy Birthday Auntie Lizzie!!!!

I love you Aunty Lizzie. Enjoy your birthday tomorrow.

Love Lance and Kate.

We’ll be thinking of you tomorrow.

xxxx

xxxxx

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Project 365:Australia-Day 2: Lance’s Official JDRF Youth Ambassador Shirt

To get into the spirit of Diabetes Awareness Month, Lance decided to wear his JDRF Australia Youth Ambassador shirt today. It is usually reserved for special occasions, such as meeting politicians and VIPS.

Lance’s JDRF Youth Ambassador shirt, adorned with Jelly Baby lapel pins.

In this photo, Lance’s shirt is on display. It makes him feel very important to be recognised as a Youth Ambassador. JDRF Australia staff have an amazing gift-they have the knack of making little people with Type 1 Diabetes feel very special and recognised for their contributions, no matter how small. The Youth Ambassador Program is a fantastic concept, that encourages kids to speak openly and honestly about their condition.

Also, attached to the shirt are four Jelly Baby lapel pins that Lance bought with his own pocket money. He actually bought six in total, and sent one to his Uncle Dan in Sydney when he was feeling unwell, and to his penpal, Brendon in the US. He is so proud to tell people the story behind the “jelly baby.”

Diabetes is time-consuming, frustrating and heartbreaking. There are contradictions everywhere you turn. Insulin is not a cure.

 

 

 

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