Help Kirk kick his AVM to the curb
Note: You may need to click "Read more" as you scroll to read Kirk's full story. Thank you!
Kirk needs help
We are here knocking at your hearts to ask for your support in raising money for the continued treatment of a brain AVM (arteriovenous malformation) via Gamma Knife surgeries, for Kirk Jason Acapulco, a loving father, supportive husband, and caring son. Each day that passes the AVM runs the risk of bursting in Kirk's brain. Please help us get Kirk the treatments he needs to save his life.
UPDATE - Kirk's next treatment is scheduled for July 21, 2021! Treatment requires pre-payment. Fundraising is now in earnest!
How will the funds be used?
Until Kirk is cured of the AVM, funds will be used to cover treatment related costs, such as:
* Diagnostic tests, like MRI and angiograms
* Gamma Knife treatment
* Hospital stay
* Medications
* Doctors fees
* Travel
* Lodging
Any remaining funds will be used to:
* Establish a suitable reserve to help offset future medical care costs Kirk may need related to the AVM treatment (e.g. follow ups).
* Help Kirk settle medical debts related to the AVM treatment.
* Help provide for the well-being of Kirk's daughter and wife.
Kirk and his family visiting one of the many beautiful beaches in the Philippines:
Kirk's story so far
On November 28th, 2014, Kirk experienced an intensely painful headache in the morning, and later in the day had a severe seizure, became unconscious and turned purple. He was given a CT scan which showed something in the left parietal area of his brain, followed by an MRI, and ultimately diagnosed with a brain AVM and started taking anti-seizure medication. Because of the nature of this AVM, he needed specialized treatment using a Gamma Knife, of which there was only one in the entire Philippines, located in Manila.
Kirk's older sister, Gizelle, then led the family on a nearly year long effort to get Kirk treated. In Manila, the doctors were surprised of the size of the AVM in Kirk's brain, and amazed he had lived through the first attack. The treatment cost was prohibitively expensive, and required getting Kirk's case qualified as a charity case to help reduce the cost. Even so, this still required gathering as many donations as possible to cover the still sizable remaining costs.
On August 13th, 2015, Kirk had his first surgery.
During the next 4+ years, Kirk's family was unable to save enough further money to pay for the continued yearly treatments Kirk needed. In 2019, Kirk was having extreme headaches again, and knew he needed to go in soon. So finally in late 2019, Kirk was able to get a personal loan to cover the funding gap.
When Kirk finally was able to go in, he learned the AVM had changed over this time. The doctors were very concerned and strongly warned Kirk that his AVM was a ticking time bomb. They admonished him that he needed to stick to the periodic treatment schedule until his AVM is cured. And so, Kirk's second surgery was October 24, 2019, with an unknown number of remaining surgeries.
On October 24th, 2019, Kirk had his second surgery.
Then COVID19 upended the lives of everyone the world over. Kirk was not able to get treated in 2020, due to lockdowns and travel restrictions in the Philippines, financial impacts from the pandemic, and the repayment burden of the personal loan. Things are still difficult, but the world has learned how to continue functioning even during the Pandemic.
So now in 2021, Kirk is taking action to have his next treatment soon! He has made the initial arrangements with his doctors, and went in for an MRI on May 3rd, 2021, to see how the AVM has faired in the 21 months since the last treatment. On June 17th, 2021, Kirk learned he needed another treatment, which is scheduled on July 21st, 2021.
The actual costs for this next treatment are not yet clear. Because the AVM is congenital, Kirk's employer provided health insurance, does not cover the full costs of the treatment. The generous aid of friends and family, added with other sources, will hopefully raise enough money for the treatments needed in this next round.
First, we ask you to support Kirk and his family in prayers. Second, if you can make a donation every bit helps. Third, please consider donating or sharing this gofundme with others. We consider each one of you angels without wings, and thank you from the bottom of our hearts for your support in prayers and financially.
Please: Help Kirk kick his AVM to the curb!
Please continue reading to learn about Kirk and his story!
Status Updates
I will record a timeline of summary status updates on Kirk's treatment in this section. More specific details may be incorporated into Kirk's story below.
May 4th, 2021 - Started the gofundme campaign for Kirk! A preemptive heartfelt thank you to everyone who decides to help in the future!
June 17th, 2021 - After a virtual consultation on results of the May 3rd, 2021 MRI, Kirk learned he needs another gamma knife treatment, scheduled for July 21st, 2021. Travel plans and preparations are being made in earnest. The pandemic stills casts a cloud of uncertainty over any planning.
Who is Kirk?
Kirk Jason Acapulco is a husband and a loving father to a sweet 4 year old daughter. He is 32 years old. Kirk lives in the Philippines, has a college degree in Bachelor of Science in Information Technology, and currently works in IT for Accenture. He is the primary earner for his family, and also helps in supporting his parents in their retirement, most especially to his disabled father. Kirk likes to play soccer, going to the beach, singing and hanging around family and friends. Kirk is a devout Catholic.
Kirk with his daughter at the beach, and a starfish!
Kirk has a what?!?
Kirk has a large AVM located in the rear/right side of his brain. This AVM is life threatening medical problem requiring many years of complex and expensive medical treatments. AVM are rare. It's not an ordinary illness!
AVM means arteriovenous malformation. It is a problem with the arteries and veins in Kirk's brain. An AVM can develop anywhere in your body but occurs most often in the brain or spine. A brain AVM, which appears as a tangle of abnormal arteries and veins, can occur in any part of your brain. The cause isn't clear.
Keep reading to see angiograms that show you what the AVM looks like. They will show you why an AVM is sometimes described as a nest or a mass of spaghetti. The blood vessels of the AVM are all interwoven.
Just how rare are AVM?
If you don't know what an AVM is, don't feel bad, as they are rare. This is why you'll find AVM listed in the NORD Rare Disease Database .
There's a good chance you don't personally know someone with an AVM. And of all the people you know, most of them also do not know anyone with an AVM, so you'd probably only hear about someone with an AVM by second hand.
Only about 3,000 AVM are detected per year in the US. That's not 1% of the population. It is not 0.1% or even 0.01%. It is about 0.001% of the population.
Or, If you went to the bank and asked for $1,000 in pennies, it would be a single penny of the mountain of pennies they would give you.
It's just 1 of these pennies... that's rare!
What does the AVM look like?
When Kirk first fell ill, he had an MRI of is brain taken in December 2014. The pictures below show the AVM, which I have circled red. The dark spots are where the blood vessels which make up the AVM have displaced brain matter. It looks similar to Swiss cheese in these pictures.
Here is an axial slice from the 2014 MRI, showing the AVM on Kirk's right side:
Here is an coronal slice from the 2014 MRI, showing the AVM on Kirk's right side:
Before the surgery in 2015, the doctor's used an angiogram to show the position of the blood vessels in Kirk's brain. This allows them to plan the treatment precisely.
These are two cerebral angiograms from August 2015, from different sides of Kirk's head. I have circled the location of the AVM on the 1st frame of each sequence, and then added arrows to point to the AVM in each subsequent frame.
Here are portions of the May 2021 MRI, which are higher quality than the 2014 above. Differences are apparent.
Is the AVM dangerous for Kirk?
Yes, absolutely!
You may not know you have a brain AVM until you experience symptoms, such a headaches or a seizure. AVM can compress or displace parts of the brain or spinal cord. In serious cases, the blood vessels in the AVM rupture, causing bleeding in the brain (a hemorrhage), which requires emergency medical attention to save your life.
According to the AANS website , AVM can have an average 4% chance of rupturing each year. Some AVM are far more risky. This article in the Journal of Neuroscience, says the risk of death 10% to 30%. Of those who survive, many have neurological disabilities.
Just before it was discovered, the AVM in Kirk's brain caused him severe headaches and seizure. Kirk must take medicine to prevent further the seizures. Kirk has to take many precautions to not cause the AVM to rupture, such as avoiding stress, avoid all strenuous physical activity or exertion of force. Kirk must avoid hitting his head. Kirk even has to sneeze with his mouth wide open to reduce pressure!
Kirk does not live near any medical facilities in the Philippines which would be able to save his life in time if the AVM were to rupture. It would most likely mean his death.
If the AVM were to rupture while Kirk was sleeping, there is nothing anyone could do.
It really is a ticking time bomb. It is scary.
Every year that goes by, Kirk is at risk of grave consequences from the AVM!
Can Kirk be cured?
Yes!
Kirk is currently getting treated via Gamma Knife at the The Philippines Gamma Knife Center located in the Cardinal Santos Medical Center in Metro Manila.
This is the only Gamma Knife located in the Philippines. It is in the capitol Manila, on the island of Luzon. However, Kirk lives on the island of Cebu, and must fly to Manila for treatment.
Kirk is being wheeled into the Gamma Knife Center in 2019:
What is a Gamma Knife?
Well, it is not actually a knife.
The Gamma Knife treatment uses many beams of radiation which precisely intersect at a single location inside the body, allowing the AVM to be destroyed and the blood vessels to restore to a more normal state.
With enough treatments, and time, it is possible that an AVM might be cured.
Here is Kirk recovering after his 2019 Gamma Knife treatment:
Why use a Gamma Knife?
Gamma Knife is used when an AVM cannot be reached by standard surgical means. The AVM in Kirk's brain is too deep inside and complex, which is why he requires Gamma Knife treatment.
Kirk's treatment uses a stabilizing frame secured to his skull to keep him steady
during the radiation treatment.
Here is Kirk during his 2019 treatment with the stabilizing frame in place:
Afterward, there's a few bandages where the stabilizing frame was attached:
Does Kirk's treatment have side effects?
Yes, there are side effects after the surgery. While the Gamma Knife is precise, it also damages and kills tissues in Kirk's brain.
Kirk does not think as clearly after the surgery. He easily forgets things, has a difficult time concentrating, and cannot always comprehend things as he used to before the surgery. Thankfully, these effects have faded over time, presumably as Kirk's brain heals itself after the surgery. Today. Kirk is his usual self, a sharp, intelligent, witty, and fun.
Some of the hair on Kirk's head also falls out after the treatment and has not grown back. Kirk enjoys long hair, and is for the most part able to cover up the bald spots. Although, he regrets that someday he may need to shave his head and go bald.
Wow! Does Kirk have super powers now?
Yes!
But don't let the name Gamma Knife mislead you. If you're thinking of how Bruce Banner became the Incredible Hulk, that's not it.
Kirk has everyday super powers, he is a father, a husband, and a caring son.
Kirk especially loves spending time with his daughter:
This sounds expensive...
Yes, each treatment cycle costs more than Kirk's entire salary in a single year. It is very expensive. The expense is so large, Kirk had to delay going in for follow up check-ups after his initial treatment.
Kirk's employer based insurance pays a flat amount because the AVM is considered a congenital illness. It is grossly insufficient for the costs.
Kirk's treatment has fallen under charity from the hospital in Manila, and thus many doctor's fees are waived and the cost of the Gamma Knife treatment reduced. We hope this continues to be the case, but since the pandemic things may be different.
Every treatment requires Kirk and at least one supporting family member to take time off work, fly to Manila, get local transportation, find a place to stay, buy meals and other personal needs. In 2014-15, it took over 3 months, and in 2019 it was just 1 month. There are tests before the surgery, the doctors need time to prepare the treatment plan, and Kirk must recover in the hospital afterward.
We don't know what the future will hold, it depends on how the AVM responds to the treatments.
In 2019, the cost of the Gamma Knife treatment, after charity reductions, was Php 620,000 (Php is Philippine Pesos). This is over twice what Kirk's take home salary is in a single year. It is a crushingly large expense for Kirk. That's just one treatment too.
Can I get that in USD?
Sure. Let's put ourselves in Kirk's shoes.
Imagine you take home about $6,000/year after taxes, etc.
So that 2019 Gramma Knife only, is roughly $13,000 USD (here in 2021). That's not it though, you still have all the other expenses too.
All paid out-of-pocket.
I bet you'd find your pocket empty, with a hole in the bottom.
And here's the kicker, in the Philippines medical services are cash up front. They will not send you the bill later after your insurance haggles and hope you can pay the difference. And if you don't have insurance, the government doesn't absorb the cost and share it with the rest of us via taxes. No pay, no treatment.
This financial abyss is why it has been so hard for Kirk to get treated.
What happened the first time...
I've written a telling of Kirk's story, but I wasn't there.
I'd like you to hear from Gizelle, Kirk's sister, in her own words, how she explained to me what happened the first time Kirk fell ill back in 2014.
She's referring to this picture of Kirk:
"This was taken on November 28, 2014 his first attack, he was confined at Cebu South General Hospital, Naga, Cebu. We didn’t know that he has brain AVM. He went to work in the morning of the said date. Few hours later he wasn’t feeling well and it seemed like his head was about to explode. He called his then girlfriend now his wife to fetch him at work and bring him home because he can’t manage to be by himself. When he reached home he slept at our parents bed. At that time our mother was so busy doing her thing at our living room. While our other brother Keith just came home from the graveyard shift. As for me I was at my room just got out of bed. Our mother got into the room to get something when she noticed that my brother Kirk was having seizures. He was shaking and got stiff. My mother shouted for help. Our brother Keith came down to check the commotion then he carried Kirk outside the house crying. I rushed to follow them outside. We saw Kirk turn purple in color with his eyes all white and he seemed lifeless. Keith’s wife Gayle provided aid to Kirk while Keith was driving the car to the hospital. When they reached the hospital Kirk was assisted right away with oxygen. The doctor then said he was lucky to get to the hospital on time, had he been late for 2 minutes he won’t make it alive. It was a close call for him. They ran a CT scan and found something unusual so they did an MRI to know exactly what’s the issue. He was then referred to a neurosurgeon for proper diagnosis and treatment."
How can I help?
Please donate whatever you can, and Help Kirk kick his AVM to the curb!
If you cannot donate now, there are other ways you can help!
What other ways I can help?
Please forward this gofundme request to others, on social media, via email, anything at all.
Kirk is a devout Catholic. He believes in the power of prayer to affect positive beneficial results. Therefore, if you can, please offer a prayer or well wishes for Kirk's full recovery and well-being.
Read more about AVMs:
Mayo Clinic on Brain AVM
Wikipedia on Cerebral arteriovenous malformation
Read more about Gamma Knife:
Mayo Clinic on Brain stereotactic radiosurgery
Wikipedia on Gamma Knife
Watch more about AVMs:
Watch more about Gamma Knife:
About this gofundme
This gofundme request is managed by Ryan Gustafson, the future brother-in-law of Kirk, and edited with help of Gizelle, Kirk's sister and my fiancée. All funds will be diligently distributed by me for the purposes outlined above.