Hope For Henry/Henry's SMA Fund

Our sweet little Henry was born May 12th, 2017 and rushed right into the NICU due to low oxygen stats, being jaundice, and getting amniotic fluid in his lungs. While in the NICU, they noticed his muscle tone was extreamly low and he was very weak. He was in the NICU for 4 days before being able to come home. We had a follow up doctor appointment 2 days later, and they were still concerned, so they referred him to another pediatrician, who then referred him to Childrens Primary in Salt Lake City, UT to see a peds neurologist and a team of other doctors. They diagnosed Henry on the first of June with Spinal Muscular Atrophy (SMA) Type 1. This is considered a fatal desease, that without proper treatment or care, could take him as young as 8 months old. Henry will be a month old on June 12th. The recommended treatment is a new drug called Spinraza, and it is not a cure, but it does help give Henry a great chance at a prolonged life (with the help of medical equipment and assistance). He has also been placed on a feeding tube and pump, because he can no longer swallow due to high risk of asperation and filling his lungs with liquid. Thankfully, our insurance approved Henry receiving Spinraza and his first treatment is set for June 9th, 2017. From there, he will have 3 more treatments, 2 weeks apart, then another treatment 2 months later, and 4 months apart after that, for the rest of his life. Any amount you are able to donate would mean the world to us, as it will help cover some of our deductible and co-pays for the visits he will be needing to do for the rest of his life. It would also possibly benefit the need for a van, as our current car does not have the space needed for the medical equipment Henry will soon need. This includes a special car seat, his feeding pump, soon a special stroller, a cough assist machine, a possible bipap machine, and a suction, among other possible medical equipment. These are all necessary things we will have to have with Henry at all times. A van would fit all of this, and make his life (and ours) a little less complicated when taking him to his doctor appointments, his treamtments, and for any occasion where he needs to be driven somewhere. If you are able to help us in donating any amount, we will be beyond grateful. If you are unable to donate, please know that we also can use as much prayer, good thoughts, and vibes as possible through out this journey. We appreciate everything and thank you all for taking time out of your day to read this. Please share and spread the word about Henry and SMA. Love to you all!