Hope for Lillian Grace
$5,260 Raised
59 contributors
3 Years running
Thank you for visiting our page and viewing our story! We appreciate the love, prayers, and support. We will never be able to express our gratitude for everything you all have done! The assistance already received is overwhelming! Thank you! More ...
The purpose of this is to assist with expenses connected to our sweet, strong Lilly's medical expenses along with our expenses as we begin a long journey to get her completely healthy. Jamie and I found out at 28 weeks that our dear Lilly had contracted what is called Autosomal Recessive (or Infantile) Polycystic Kidney Disease, aka ARPKD. Little is known about this disease because it is 1. very rare ( 1:40,000), 2. often undetected because it doesn't show up until late in pregnancy, and 3. those few babies with the disease often do not make it past their 1st month of life.

Since Lilly's birth on 1/15/2013, she has yet to come home and has been in the Neonatal ICU ever since; going on 6 weeks now. From the day we were lucky enough to welcome her, Lilly had already beaten so many odds and has had a game plan all her own. Our journey has also contributed to an insane emotional roller-coaster like nothing Jamie or I have ever been on. Neither of us had ever experienced these types of emotions; the love, worry, empathy, guilt, stress, etc. which parents feel.

Though she has come a very long way, the financial element is beginning to become a legitimate concern. While the last thing Jamie and I like to do is ask for help, especially financially, we KNEW it would be an all-around challenge from the moment we found out she had ARPKD. Now, nearly 6 weeks from Lilly's birth, the medical bills and expenses associated with driving to/from the hospital and spending every available minute with our Angel is beginning to take a significant toll.

To this point, we have asked for love, support, and prayers. Now, we extend our request and are humbled to ask for any monetary help we can receive. While it is difficult for us to ask for, we have an incredible journey ahead of us. Should we exceed our goal or have an abundance of support, know a contribution to Wolfson’s Children Hospital and the PKD Foundation will be made.
Some statistics:
Chance of getting ARPKD  1 in 40,000 births (pkdcure.com)
Average cost of NICU per day  $1,200 - $3,500/night (ehow.com & foundationforprematureinfants.org)
Average cost of kidney transplant  $262,900 (transplantliving.org)

For more info about the disease or our journey specifically, please visit the links below:
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