We have been wanting to share how we have been using the Team Tori funds for quite a while as a way of being transparent, as well as to show our stewardship with the amazing financial blessings that have been sent our way by very generous people.
Since the amount is publicly known, we wanted to use this as a way to say thank you once again. We don’t feel that we “owe” an explanation, but we want to give one as a way to show you how much your generosity has blessed us and has enabled us to take even better care of Tori than we could have on our own.
When our friend Jessica surprised us with the GoFundMe page we were still in the hospital with Tori, pre-Krabbe diagnosis. She set it up to cover both medical and living expenses that we might incur because of Tori’s situation. We had no idea what we were facing or how much it was all going to cost. To say that we were blown away by the support that came in is an understatement!
We would have been more than happy with the original goal she set of $5,000, which would have covered our deductible and out-of-pocket requirements for our insurance; but you kept giving and giving, and eventually over $19,000 was raised. That doesn’t include the cash, checks, and gift cards that were sent directly to us, either!
You may have been wondering how have we spent the money, so we want to share with you that we have done so very carefully. This probably doesn’t include everything because my memory has been affected by a lack of sleep, but it gives you an idea! We promise that none of it has been used frivolously or carelessly, and all has been for Tori’s benefit.
Because of your generosity, we…
- Filled up our HSA (health savings account) as much as was allowed legally in order to pay medical bills;
- Purchased a deep freezer to hold Tori’s breastmilk;
- Purchased essential oils to aid in keeping Tori (and us) healthy, as well as to help with pain relief for her;
- Purchased an inexpensive laptop ($300) for hospital stays and traveling so that we could update the blog and communicate properly (we discovered how difficult it was to only use our phones while we were in the hospital for five days with her in February);
- Purchased supplies and ordered photos to create her Project Life albums so that her story is fully recorded in words and photos;
- Reduced Brennan’s work week from five days a week to four days so that he can be home with Tori three full days a week…
- Started making memories with Tori off of her “Bucket List“;
- Paid for our stays at the Ronald McDonald House and other expenses to get us to and from Pittsburgh for her appointments;
- Took Tori to California to see Lesa’s side of the family, who aren’t able to travel to see her in Pennsylvania;
- Helped another Krabbe family pay for a piece of equipment they desperately needed and insurance was fighting with them over;
- Traveled to the Hunter’s Hope Symposium where we received much needed encouragement and knowledge;
- And more than I can even remember, I’m sure…
All of that listed above amounts to less than $10,000.
On top of this, you all voted diligently and we won $1,000 in free gas from Exxon! This is going to last us for a very long time and we were able to take gasoline out of our budget! Huge blessing!
As you can see, YOU have been God’s hands and feet to us, and through you He has taken care of some significant needs during this time. This has eased some of burden we carry in this journey with Tori and has allowed us to have much-needed time together as a family. Priceless.
We have been so fortunate to have amazing primary insurance that has covered EVERYTHING for us. We do not take this for granted or even expect it to continue, given the issues that so many families have shared with us.
We had kept most of the money in savings in order to pay for things we assumed that insurance wouldn’t cover, but, thus far, Brennan’s insurance has covered all of her equipment, even the $5,300 adaptive stroller!
But, once we got the stroller we realized that we had a significant problem: it wasn’t going to fit in either of our cars.
Her stroller, which provides comfort and support so that she can travel more comfortably, would not be able to leave the house/neighborhood.
We realized that a different vehicle would be required, so we started looking, knowing that we didn’t have the money saved up to pay for it (we follow Dave Ramsey and don’t believe in financing anything 🙂 ), nor could we afford a car payment right now.
So, after seeking counsel from trusted friends and family, and after prayer, we decided that this was the best possible use of the Team Tori funds that we had left. After all, what good is all of this equipment if we can’t take Tori out of the house?
We knew our budget of $14,500 was low for a minivan, but we started looking anyway. There were three used minivans on the market at local dealerships, all with low mileage and unbelievably low prices. We consulted with a friend who is a car expert and he advised us to pursue one of the three – the same one we loved!
So, we went to the dealership, test drove the one van (2011 Dodge Grand Caravan Crew) we loved the most (and Tori slept through the entire test drive because she was so comfortable in it!); they wanted more than we had for it, but Brennan did an amazing job of negotiating and talked them down to exactly what we had left in the Team Tori fund!
We paid for the van in cash and walked away SO excited, knowing that Tori would now be SO much more comfortable in “her” van, and knowing that we didn’t have to be afraid to take her out of the house as much anymore.
Tori always used to cry in the car…she rarely cries in the van now. It is obvious that the smoother ride has made a difference for her.
We absolutely believe that the purchase of the van was a God-ordained thing! From the timing to the amazing van we found for just the amount of money that we had, to the fact that it can not only store all of Tori’s equipment with room to spare AND she is comfortable, it has been one of the greatest blessings of our lives.
The fund has been building back up thanks to so many donations toward her “Bucket List” – and that is exactly what those funds will be used for. Experiences, memories, joy. Designated funds are used as they are designated.
We are very diligent with these generous gifts that you have given to us and we do not take your generosity for granted. Every gift that we have received has left us in awe and wonder of God’s love – and your love – for Tori and for us, that even in the middle of the worst storm of our lives, He is there, calming the waves and making a way for us to focus on the important things, like loving Tori with our whole hearts.
So, THANK YOU. Thank you for supporting us, for organizing fundraisers, for designing t-shirts and bracelets and Jamberry wraps; for bringing us meals, for pumping breastmilk so that Tori has nourishment; for sending Tori cards and gifts (and giraffes), and for allowing the three of us to have so much cherished time together; thank you for spreading awareness about Krabbe and leukodystrophies, for contacting your legislators about Newborn Screening legislation.
Most importantly, thank you for continuing to pray for Tori and for us. We know that God hears our prayers, and even if He chooses to answer them in a way that we don’t like, we will still praise Him and serve Him, because we know that He is good, loving, and kind.
Thank you doesn’t seem like enough. This long post doesn’t seem like enough. Know that we are so blessed by each and every one of you who follow Tori’s story. Your encouragement and prayers get us through each day ❤