Henry needs a New Pump
Donation protected
As you all likely know, Henry is a type-1 diabetic. He was diagnosed before he was 13 months old, and has lived with his disease ever since.
Type-1 diabetes is an expensive disease, and it uses a lot of supplies. Henry wears an insulin pump, and his regular supplies are:
1. The insulin pump itself
2. Insulin Reservoirs
3. Infusion sets
4. Backup syringes
5. Glucose Test Strips
6. Glucometer
7. Alcohol wipes
8. Lancets
9. Lancet pen
10. Skin adhesive prep pads
11. Adhesive bandages
12. Urine Ketone strips
13. AA Lithium batteries
14. Glucagon
15. Novolog
16. Backup Lantus
17. Fast-Acting Glucose for Hyperglycemia
18. AAA batteries
19. Protective Skins (screen protectors) for Medical Equipment
20. Continuous Glucose Monitoring Sensors
21. Continuous Glocose Monitoring Transmitter
In addition to using these supplies regularly, we are also required to stock extra supplies in the health office and at our day care provider.
As you also know, we have struggled with insurance appeals, high medical costs, child care, and school 504 meetings along this journey... and have been blessed with your support throughout all of them. Your support emotionally, materially, and even with your votes in recent months has always been close to our hearts. We are so blessed to be surrounded by so much love and support. And I am embarrassed to call on our friends yet again, this time for your financial support... but we are desperate.
In September of 2017, Henry received a Medtronic 670G insulin pump. This pump was supposed to be a game-changer, but it has been awful for him. The pump uses data it collects from CGM readings and finger sticks to calculate a basal rate insulin dosage for Henry, adjusting automatically to help regulate blood sugars and keep them in tighter control. This “auto-mode” feature was touted as the best available, and perhaps it is... for adults. Henry’s tiny body goes through so many changes at his age that affect his blood sugar: hormones, growth spurts, illness, eating pattern changes, sports, etc... that the pump simply can’t accurately interpret the calculations it needs to function correctly.
The result is horrendous. We are up all hours of the night, night after night, addressing pump alarms. We are leaving work to change sensors (and the like) so much our employment is at risk. Henry is being held back from the school bus, and stigmatized because he is the kid who always has the nurse with him. His a1c has increased from 7.0 to 8.5. The school nurse was in TEARS today, because she spent the ENTIRE day getting called down for pump alarms. Henry snapped at her in his own frustration, which hurt her feelings (although she understood and didn’t blame him). And Henry’s poor teacher has to interrupt her lessons to call the nurse every time it alarms (which at this point is up to 15 times in a single day). The nurse is struggling to juggle Henry’s pump alarms with her duty to the other kids in the school, because the pump is demanding more of her attention than all other kids in the school combined. And how is Henry going to learn with these CONSTANT pump interruptions in class? It has gotten out of control and a lot of people are about to break...
Thankfully, my new insurance eases the burden of the high medical costs we were experiencing... but we still have copays on all the supplies listed above (or pay OOP), which adds up quickly. And unfortunately, Henry’s pump is still considered to be in-warranty by the manufacturer, so our insurance will not cover a new, more appropriate insulin pump or Henry. We will have to pay OOP for a new insulin pump.
Tandem (an insulin pump manufacturer), offers a program for people in our situation, though! They will essentially loan Henry an insulin pump until his current pump reaches its warranty date and we become eligible to order a new pump through our insurance company. Just in time for Christmas, the program is offered at a cost of $999.
I have to shamefully admit that we can’t afford the $999 to make the payment though, and I’m reaching out hoping for help in our desperation. The additional $200 in this campaign is to help cover the gofundme fees associated with using the platform (which will total about $300+. We can afford to make up the difference and cover the initial supplies.
Please please please note that once we have the cost of the new pump covered and are set up on the system, our insurance will pick up the monthly supplies in lieu of the supplies we already receive; so there is no need to try and surpass our goal on this campaign, if it gets there (which would be AMAZING).
I hope you’ll look past my failure as a parent to not be able to afford this and consider donating to help Henry for his sake... he just wants to go to school and learn and be like every other kid without his pump going off 15 times a day and drawing attention to him.
Thank you all so much for your support! You have already had such a profound impact on our lives that words can’t even convey the gratitude we have for you.
Type-1 diabetes is an expensive disease, and it uses a lot of supplies. Henry wears an insulin pump, and his regular supplies are:
1. The insulin pump itself
2. Insulin Reservoirs
3. Infusion sets
4. Backup syringes
5. Glucose Test Strips
6. Glucometer
7. Alcohol wipes
8. Lancets
9. Lancet pen
10. Skin adhesive prep pads
11. Adhesive bandages
12. Urine Ketone strips
13. AA Lithium batteries
14. Glucagon
15. Novolog
16. Backup Lantus
17. Fast-Acting Glucose for Hyperglycemia
18. AAA batteries
19. Protective Skins (screen protectors) for Medical Equipment
20. Continuous Glucose Monitoring Sensors
21. Continuous Glocose Monitoring Transmitter
In addition to using these supplies regularly, we are also required to stock extra supplies in the health office and at our day care provider.
As you also know, we have struggled with insurance appeals, high medical costs, child care, and school 504 meetings along this journey... and have been blessed with your support throughout all of them. Your support emotionally, materially, and even with your votes in recent months has always been close to our hearts. We are so blessed to be surrounded by so much love and support. And I am embarrassed to call on our friends yet again, this time for your financial support... but we are desperate.
In September of 2017, Henry received a Medtronic 670G insulin pump. This pump was supposed to be a game-changer, but it has been awful for him. The pump uses data it collects from CGM readings and finger sticks to calculate a basal rate insulin dosage for Henry, adjusting automatically to help regulate blood sugars and keep them in tighter control. This “auto-mode” feature was touted as the best available, and perhaps it is... for adults. Henry’s tiny body goes through so many changes at his age that affect his blood sugar: hormones, growth spurts, illness, eating pattern changes, sports, etc... that the pump simply can’t accurately interpret the calculations it needs to function correctly.
The result is horrendous. We are up all hours of the night, night after night, addressing pump alarms. We are leaving work to change sensors (and the like) so much our employment is at risk. Henry is being held back from the school bus, and stigmatized because he is the kid who always has the nurse with him. His a1c has increased from 7.0 to 8.5. The school nurse was in TEARS today, because she spent the ENTIRE day getting called down for pump alarms. Henry snapped at her in his own frustration, which hurt her feelings (although she understood and didn’t blame him). And Henry’s poor teacher has to interrupt her lessons to call the nurse every time it alarms (which at this point is up to 15 times in a single day). The nurse is struggling to juggle Henry’s pump alarms with her duty to the other kids in the school, because the pump is demanding more of her attention than all other kids in the school combined. And how is Henry going to learn with these CONSTANT pump interruptions in class? It has gotten out of control and a lot of people are about to break...
Thankfully, my new insurance eases the burden of the high medical costs we were experiencing... but we still have copays on all the supplies listed above (or pay OOP), which adds up quickly. And unfortunately, Henry’s pump is still considered to be in-warranty by the manufacturer, so our insurance will not cover a new, more appropriate insulin pump or Henry. We will have to pay OOP for a new insulin pump.
Tandem (an insulin pump manufacturer), offers a program for people in our situation, though! They will essentially loan Henry an insulin pump until his current pump reaches its warranty date and we become eligible to order a new pump through our insurance company. Just in time for Christmas, the program is offered at a cost of $999.
I have to shamefully admit that we can’t afford the $999 to make the payment though, and I’m reaching out hoping for help in our desperation. The additional $200 in this campaign is to help cover the gofundme fees associated with using the platform (which will total about $300+. We can afford to make up the difference and cover the initial supplies.
Please please please note that once we have the cost of the new pump covered and are set up on the system, our insurance will pick up the monthly supplies in lieu of the supplies we already receive; so there is no need to try and surpass our goal on this campaign, if it gets there (which would be AMAZING).
I hope you’ll look past my failure as a parent to not be able to afford this and consider donating to help Henry for his sake... he just wants to go to school and learn and be like every other kid without his pump going off 15 times a day and drawing attention to him.
Thank you all so much for your support! You have already had such a profound impact on our lives that words can’t even convey the gratitude we have for you.
Organizer
Kelsey White
Organizer
Hudson Falls, NY
