Riley's New Lungs
Donation protected
Riley has been waiting 720 days for her new lungs. That is nearly 35% of her life waiting to run, play, swim, and breathe like a normal soon to be 6 year old girl. She has also spent a combined total of just over 25% of her life in the hospital. We anxiously await the day Riley receives her gift of life and a new chance at experiencing life in the way every child should! Although my husband and I both work, we can not meet the expenses alone. It takes a lot, and I mean A LOT to ask for help. It is humiliating, and awkward for us to do, but we have to try. We only held few fundraising events for just that reason. I wanted to maintain some dignity, grace, and pride throughout all of these years, but now we have to seek help. We can not meet the costs of copays, deductibles, gas, parking, meals, and missed wages alone.
To explain the costs involved more deeply -
My employer takes $230 directly out of EACH of my paychecks for health insurance - almost $500 a month, and the only reason I continue to participate in the plan because it has APPROVED her transplant for when it comes (minus a massive charge for 'organ procurement' that they do not cover). We can stay at the gift of life family house in philadelphia when the time comes - but it is not free - it is $40 a night. Gas for ONE trip to the center and back home is $16 (80 miles roundtrip), parking is charged daily - even if you don't leave the garage. For some reason, hospitals also charge 5 star dining prices in their cafeterias. Meals on the go are a way of life during hospital admissions. After discharge - Riley will be able to come home, but will need to visit her center A LOT for the first year.
The transplant team told me Friday that their average wait time is currently 18months. With Riley waiting almost 2 years - I think her time for transplant is very close, and I know we are not financially prepared. I'd like to feel more comfortable and secure going into this. I don't want to worry about not having enough money for gas, parking, lodging, meals, when our only worry should be Riley and making sure she is in the best state of health possible PRE and POST transplant to allow for the absolute BEST outcome and long term survival post transplant.
I am thankful to everyone who has donated so far. Many of the donors are people living with Riley's illness, Pulmonary Hypertension. Most of them are parents of children with pulmonary hypertension. Other people who have donated are people who are post transplant. It shows me that they too know how hard it is, and even though they struggle too - they want to help take this one worry away from us. There are also some people who have donated who do not know what this journey is like - but wanted to help. I thank you all.
So there you have it, I finally spilled it all out on a public crowdfunding website, taking what little shame I may have had left to ask for help. I am asking for help to make sure my girl can have a great chance at a long beautiful life.
To explain the costs involved more deeply -
My employer takes $230 directly out of EACH of my paychecks for health insurance - almost $500 a month, and the only reason I continue to participate in the plan because it has APPROVED her transplant for when it comes (minus a massive charge for 'organ procurement' that they do not cover). We can stay at the gift of life family house in philadelphia when the time comes - but it is not free - it is $40 a night. Gas for ONE trip to the center and back home is $16 (80 miles roundtrip), parking is charged daily - even if you don't leave the garage. For some reason, hospitals also charge 5 star dining prices in their cafeterias. Meals on the go are a way of life during hospital admissions. After discharge - Riley will be able to come home, but will need to visit her center A LOT for the first year.
The transplant team told me Friday that their average wait time is currently 18months. With Riley waiting almost 2 years - I think her time for transplant is very close, and I know we are not financially prepared. I'd like to feel more comfortable and secure going into this. I don't want to worry about not having enough money for gas, parking, lodging, meals, when our only worry should be Riley and making sure she is in the best state of health possible PRE and POST transplant to allow for the absolute BEST outcome and long term survival post transplant.
I am thankful to everyone who has donated so far. Many of the donors are people living with Riley's illness, Pulmonary Hypertension. Most of them are parents of children with pulmonary hypertension. Other people who have donated are people who are post transplant. It shows me that they too know how hard it is, and even though they struggle too - they want to help take this one worry away from us. There are also some people who have donated who do not know what this journey is like - but wanted to help. I thank you all.
So there you have it, I finally spilled it all out on a public crowdfunding website, taking what little shame I may have had left to ask for help. I am asking for help to make sure my girl can have a great chance at a long beautiful life.
Organizer
Christina Buchanan
Organizer
Wilmington, DE
