Donate to help Harvey with his Type 1 Diabetes

Type 1 Diabetes is incurable. On the 8th of May 2024 Harvey was diagnosed with type 1 Diabetes. Harvey was almost 5 years old when this diagnosis changed the way he would have to live the rest of his life.

Harvey is just about to start Kindergarten and we would really appreciate if you could help us pay for many Diabetes associated costs that are not covered by NDIS or NDDS or the IPP or Medicare. Around 22 January 2025 Harvey was fitted with a 'loaner' from a supplier to trial to see whether he will be a suitable candidate. From our understanding a permanent insulin pump costs around $8800. To get one there are choices; including:

1. Purchase outright,

2. Claim on private insurance, or

3. Support from the government's Insulin Pump Program (IPP).

However, it is not at all as easy as that. $8800 is a lot for a single mum who finds it a challenge to take on fulltime work or even part time work because she has to constantly monitor Harvey's blood levels. Insurance companies have a 12 month exclusion period. So, even though Harvey now has private insurance, he has to wait 12 months or more and insurance is still a very expensive luxury for a Mum who cannot work because Harvey's blood must be monitored 24x7 or he might fall into a coma or his organs could be attacked and damaged by ketones. Finally, the federal government Insulin Pump Program ('IPP') looks rosy on paper. However, the reality is that it seems that the IPP has been put on hold since around 2023...plus there is now a long, long waiting list too! As at June 2023 the waiting list was over 395 people. Also...the Catch 22... if you take private insurance you are ineligible.

So, in reality, the only two options seem to be; firstly, pay for expensive private insurance for the 12 months exclusionary period, and then on an ongoing basis. Or, secondly, buy a pump outright. Hence, it seems that to purchase a pump outright is the only way forward for Harvey at the moment.

To be clear there are some that will say, "Oh there is Centrelink or the National Diabetes Disability Scheme or the NDIS. There is plenty of Government funding." This is not accurate. For example, Centrelink is around $650 a week. Try budgeting on that? Rent $420 per week. Water, Electricity, Gas, Insurances, Green Slip, Fuel, Internet, Phone, Private Health cover....these are more than $230 a week! So how does one pay for food, school fees, God forbid clothes, haircuts, school shoes, uniforms, or a coffee, or a movie ticket!

Then there are those that might say, what about the subsidies for insulin etc. The answer is just that, they are subsidises, not free! Plus, the tester machine that is supplied uses strips that are not covered by any of the subsidies or programs. Those strips cost around $60.00 a pack and somedays Harvey will need a full pack when his levels are all over, or the scanner stapled into his arm is not working or is not accurate.

There are those that claim the NDIS covers it. Well, in some cases; for example, a continuous glucose monitoring device and insulin pump. Harvey has a CGMD stapled to his arm but he has not an insulin pump. The NDIS say, "We can only include these supports in your plan if you can give us evidence that the assistive technology will reduce your need for other supports, such as a support worker or nurse, or you’ll be more independent or it’s an NDIS support for you. Like all NDIS supports, assistive technology supports must meet the NDIS funding criteria to be included in your plan". The funding criteria is not easy to meet. In some ways, it is really for people whose diabetes have caused another disability such as blindness, or failed kidneys or other things brought on by Diabetes. Or the NDIS might cover a nurse to administer insulin if you can't or a nurse to help with your education or training. BUT here is the fine print..."We can only include supports in your plan if they meet all the reasonable and necessary criteria. That means you have to meet ALL of the following criteria:

As you can appreciate; it is not easy to meet ALL the criteria to be eligible!!

Then on top of this the law for the NDIS sets out things that the NDIS say they need to "consider when we apply the reasonable and necessary criteria". So, in Harvey's case, as he can survive with needles, it is likely not reasonable or necessary for a pump according to NDIS. Here is the kicker...the NDIS words "Reasonable and necessary supports". The law says that the supports need to meet the criteria set out in law. The NDIS says, "supports should complement, not replace, other supports available to you". That’s why they say they consider "the things you’re able to do for yourself, support you have from others in your network, including family members, relatives, friends".

So, In other words, if mum can give a needle then it is not necessary for a pump! Yes... that is how it seems to work!

An insulin pump is a small device that has tubes and a small catheter attached to his stomach. Harvey wears the pump on his belt. It is not yet known whether it is going to be suitable or not but we are hopeful. If it works fantastic but there are still support that we can give with things that are not covered by NDIS or NDSS etc; like consumables, insurance and other financial support for some of the hidden costs of living with Type 1 Diabetes.

SO, what is Diabetes? Type 1 Diabetes is an auto-immune disease. Diabetes is where the body attacks its own organs. This is why Harvey's body attacked his Pancreas to the point where it no longer works. This is why he cannot produce insulin.

Insulin is needed for heart function, brain function, kidney function and the function of all Harvey's organs. You may not realise just how gruelling Diabetes is - especially for a 5 year old boy and his mum. Since Harvey has had Diabetes, it has opened up our family's eyes to what a little child with diabetes has to endure - every single day for the rest of his life.

Most have heard of Diabetes. Many people think Diabetes 1 has something to do with diet. It hasn't. It is caused randomly. No one knows why. It means Harvey cannot survive without insulin. Insulin is usually given by needle. However, an electronic pump can be fitted to automatically administer does of insulin so Harvey doesn't have needles all day and through the night.

Harvey's daily routine is something like the following. Firstly, Harvey has to have his bloods tested every two hours or so to see if his glucose levels are high or low. His test also tests his blood for ketones. Ketones are caused by a chemical reaction with Harvey’s liver and the acid in his blood. Diabetic ketoacidosis (DKA) is very dangerous. DKA can cause brain to swell, cause an irregular heartbeat, kidney and organ damage, leakage of muscle cells into the blood, and also even more dire outcomes.

To test blood levels, Harvey has to have his finger pricked with a needle. Then his finger is squeezed for the blood to be drawn out for testing with a machine. The machine tests for both ketones and the levels of glucose in Harvey's bloodstream. If Harvey's blood glucose levels are too low he needs glucose and carbohydrates to help raise the glucose. Harvey might need to have fruit juice, jelly beans or glucose powder. Then he must sit and wait for around 10-15 minutes for his blood levels to get higher. He will have his finger prick blood tested again, and he may need to have something else, like a sandwich or a banana. Then he needs to wait another 10 - 15 minutes...and so on. Every meal must be weighed and insulin calculated. Without insulin the cells cannot reach the glucose. Without glucose, cells die.

So, it may not seem like a big deal for some but waiting on this process is a long time for a 5 year old boy who has to wait and watch his friends or cousins play around him. Harvey, even had sit on the side lines at his own birthday because his levels were too low. It can be so frustrating and tormenting.

On top of the needles, Harvey has a blood glucose reading sensor that is stapled into his arm every week or so. The sensor reads blood levels. Imagine every week having a sensor punctured into your skin. It has to stay there for up to 10 days. However, they do often come out due to wear or malfunction which can be quite a terrifying ordeal for the little lad.

Being so young he doesn’t quite understand why he’s being poked and prodded. Sometimes, he asks why everyone is hurting him, or why this is happening to him? It is rather heartbreaking watching Harvey get upset, and even more for Harvey.

Harvey is such a bright and a very unusually outgoing and caring little boy. Everyone who meets Harvey is taken back by how he openly chats to all. He is a happy child but Harvey needs insulin to live and MUST have insulin injected via needle 15 minutes before every meal, snack or drink. Sometimes, there is no option but to hold him down to administer the insulin. This is a really upsetting experience for Harvey, as well as his family. Other times, Harvey is brave and lays there while he gets the needle. Nobody really likes needles, but imagine having so many needles that your stomach is bruised.

Not only does Harvey's blood levels need to be constantly monitored but so does his food. Harvey can’t just have a piece of fruit or even vegetables without insulin. We must weigh and calculate every piece of food and drink Harvey consumes. Then we must calculate accurately how many carbohydrates are being consumed and work out the insulin to inject before he eats. This can be quite difficult sometimes when Harvey doesn’t always want to finish his dinner. Or, somedays he is even still hungry after eating dinner, and might want more but he can’t due to not having allowed for the extra insulin for the additional food.

Harvey is an old soul. Always outgoing. constantly trying to make everyone laugh. He loves having a chat - to anyone and everyone and he loves to hand out compliments. Harvey is an active, growing boy, and it is a constant task to check his sensor reading every 10 or 15 minutes. His blood glucose is never constant. Many things play a part in the rise and fall of his levels, how active he is, food intake, stress, excitement, the list goes on. He is at risk of hyperglycaemia and hypoglycaemia at any time of the day. Both are serious and life threatening if not treated correctly and immediately.

Harvey is a little 'bush' boy. He loves playing outside with his animals. He is caring, open, honest, and loves all things animals, trucks, and motorbikes. However, diabetes has turned his world upside down. Although, he loves horse riding it is very difficult to do this at the moment.

Without insulin, and without constant vigilance then Harvey's life is threatened.

There are no holidays from Diabetes. No days off. All day, everyday and forever for the rest of Harvey's life. Even with slow release insulin, Harvey's levels must be checked every two hours - even through the night. If Harvey's levels are too high or low then they must be corrected with insulin or carbohydrates. Diabetes does not stop when Harvey is asleep. If lows and highs are not levelled in time then Harvey could fall into a diabetic coma, have seizures and or die - this is the reality of Diabetes.

Harvey, and his mum Courtney are pretty well exhausted. There is little support from government other than fluff and bubbles of promises. So, it is extremely hard for Harvey's mum. As working fulltime is not an option. The struggles of barely covering rent, utilities and not really even food. So, sometimes, the decision is whether to buy food - or buy a pack of blood test strips (NDIS doesnt cover ketone strips for the brand of sensor Harvey uses. These strips can cost $100 or more a week. Harvey needs the tests. It is really that dire.

Courtney, is also exhausted but she is an incredible Mum. She has never complained and not once asked for help. As a grandfather, I do want to try to help.

I cannot help but think that with Harvey's open, caring, and loving nature that he might be destined for something great. Perhaps, he might help others by raising awareness in the community for Diabetes type 1. So, that’s why I’ve set up this page.

What can we all do? Well, there are a few things that will really, really make a difference. Unfortunately, they all involve money and "It takes a village to raise a child". So, we can all help by each of us donating a little to Harvey and Courtney's future. I'm sure they will pass it forward at some point in the future too!

Right now, Harvey needs financial support for medical supplies. Blood testing strips for example, but If we help buy an insulin pump it can help so much by monitoring Harvey's blood levels and automatically releasing insulin. The pump is permanently attached to Harvey. Although the pump still has risks, and Harvey's levels still need to be monitored, a pump would really be a big help.

However, pumps are quite expensive, and are not covered under Medicare. There is the exclusion period under private health insurance too. So, we are hoping to raise AUD$10,000 for Harvey's first insulin pump. Secondly, without going into detail, Courtney has been a single mum since not long after Harvey was born. It has been very difficult. Truly, she is one of the best mums we have ever seen. However, with only a small income it is very tough.

If diabetes wasn't enough of a strain, recently, Courtney's Holden Barina has a mechanical issue. This has meant Courtney has had to borrow a family member's car to ensure transport if there is an urgent situation. Waiting for an ambulance might be too long or too late. So, we think as a community we could help to get Courtney's car back on the road. It will cost around AUD$2000.

Courtney is an amazing young woman. She is so helpful to me and to others. She really spends her life dedicated to Harvey. Both Harvey and Courtney needs a bit of a break to make things brighter.

Thank you for taking the time to read about Harvey. Please try to help us help Harvey and Courtney by donating today. We promise, every cent you donate will help to change Harvey's life for the better.