After Ava's first birthday Dan & Kristen started to notice that something wasn’t quite right. After months of testing and many hospital visits they finally received a diagnosis for sweet Ava Rose over the Christmas holiday. It was with heavy hearts that Dan & Kristen shared Ava was diagnosed with Tay Sachs (a terminal neurological disorder) and there is no cure. The conversation has now shifted to quality and comfort of life. At this time Ava is not in any pain and anything that can be done, they are doing, to keep her happy and comfortable. Recently, Ava had surgery for a g-tube (feeding tube) allowing her to eat and drink without choking or aspiration. This has been a huge step for her comfort and health. She is on medication for treating seizures, which is the newest challenge at hand.
Due to the extreme sensitivity of this topic, our very private and reserved friends... Kristen & Dan, have respectfully posted to FB that while they greatly appreciate support, kind words, and prayer - they request privacy for the time being as they navigate this very difficult time.
Kyle Aramburo, Howdice Brown III, and I asked Kristen & Dan if we could help by setting up a gofundme for them as we want healthcare costs (and/or other costs associated with her care) to be the farthest thing from their minds. While the idea was met with some hesitation, Kristen & Dan have agreed to our idea with the following stipulation: All money raised will be applied toward their healthcare costs related to Ava's condition. Dan and Kristen will be donating any remaining funds to the NTSAD and Helping Hands Fund as these folks helped them attend the National Tay-Sachs & Allied Diseases Association (NTSAD) annual family conference in North Carolina. This opportunity allowed them to meet, support, and be supported by other families affected by this disease - and if possible Kristen & Dan want to pay this assistance forward. Long story short, we are soliciting donations on behalf of Kristen & Dan.
Thank you for viewing this gofundme, your support, and for sharing. If you have any questions you can message this account, Kyle, Howdice, or myself via text / Facebook.