Secondly, we know that not everyone is going to agree with this method of fundraising, or with the method for which we have chosen to start our family. However, please be kind and understand that Aaron and I are facing a very rare and unusual situation, and we are doing what we personally feel is best for our future. When it comes to having a family and bringing a child into this world as safely and securely as possible, without the crippling debt that IVF and genetic treatments can create, well...we "Ain't Too Proud To Beg." :)
Two years ago, Aaron was diagnosed with a very new and very rare hereditary disorder called GATA2 Mutation. This is a genetic disorder that was recently discovered (within the last 4 years) - one that devastated Aaron's family and took the lives of Aaron's father, uncle and cousin.
What this basically means for Aaron is that he is facing the increased potential of developing auto-immune diseases, and that he is at risk of getting very sick, very suddenly. To spare you the medical jargon/details of this disorder, we will provide you with the following link for further reading (this is the best we could find - most are medical journals that WE don't even understand!):
We are currently a part of a government study through the National Institute of Health in Bethesda, MD. We travel to the center once a year for bone marrow biopsies, EKGs, countless bloods draws...the works. It's not fun, but thanks to patients like Aaron, they are discovering more and more about GATA2 and the resulting effects as time goes on - and we are so grateful to them for their continuing care and compassion. We are blessed with a seriously AMAZING team of doctors.
As we stand right now, Aaron is likely to need a bone marrow transplant at some point in his future. This is if, God forbid, his health declines. He has to take daily antibiotics, probiotics, and get semi-annual blood draws at a local clinic to monitor his blood counts. The whole process involves pain, stress, fear and uncertainty that we would never wish upon anyone.
That brings us to why we are starting this campaign.
When it comes to having children naturally, we are stuck with a 50/50 chance of passing this down, even if Aaron were to successfully undergo a transplant and be "cured" of the disorder. That leaves us with some very difficult decisions to make. We have come to the conclusion that In-Vitro Fertilization (IVF) with Preimplantation with Genetic Diagnosis (PGD) is our best option to make sure that we stop this disorder in it's tracks, and ensures that our children will not have to live with the financial and emotional burden of this diagnosis. As much as we would like to do things naturally, we both agree that we could not bear to potentially bring ANY sort of suffering to our children, knowing that we had the option to prevent it...so we have chosen to undergo these treatments.
Unfortunately, these are both VERY costly procedures, and there is no guarantee that they will take. The cost of a single attempt for IVF with PGD is upwards of $25,000, none of which is covered by insurance. We have set our goal at $40,000, in hopes of having the total means (after we save up for awhile) for 2 successful implantations to have children. This also leaves us with most of the funds to make another attempt if the first is unsuccessful. So we are hoping to get AT LEAST one happy, healthy little Baby Bender when all is said and done!
We are not immediately planning on starting our family (Don't get too excited friends and family!!), but the sooner we can get enough money to move forward, the sooner we can start consultations. We promise you all that this money will 100% go towards the counseling, treatment, and care that is required for IVF. We have a savings account set up to keep the money while we do our fundraising, and that it where it will stay until we are ready to begin this next chapter!
We know that this is asking a lot. We know that it's a lot of money. But we wanted to start talking about it now, so that we have the time and support to become financially and emotionally prepared for when the time comes to begin treatment. We would much rather be able to put our future savings toward building a great life for our kids, rather than spend the rest of our lives paying off the debt of even being able to have this procedure in the first place. That is why we are asking for your help.
Hopefully in the near future we will have some local fundraisers in our hometowns - any and all suggestions are welcome! We want to not only raise money to start a family, but also raise awareness about this disorder and get the word out about joining the Be The Match Bone Marrow Registry!!
We hope that you understand our reasons behind these decisions, and we are so grateful that you took the time to read this far :) My heart is racing as I type this, knowing that we are making such a huge step in our lives and humbly asking for your assistance in doing so! We love you and appreciate your support in this - more than you know.
If you have ANY questions as to where exactly this money will go, please do not hesitate to ask for more details. Also, if you could please share this link with your own networks, we can reach more people and you can ALL become a part of our story!!
Thank you SO much!
Kate and Aaron Bender
- Angie Cornell
- BrianBrian Austrin
- Derrik Boland
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