Hope For Henry/Henry's SMA Fund

$2,040 of $9,000 goal

Raised by 20 people in 8 months
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!
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I haven't posted much about Henry's SMA journey in a while, so this will be a long post. Tomorrow we are driving down to Salt Lake to be admitted for his G-tube and Nessen surgery that will take place on Monday morning. For a typical person, being admitted a couple hours before a surgery is the norm. In Henry's case, because of his SMA, he has to be admitted the day before so the doctors and nurses can monitor him and he has to do fasting a lot differently because SMA children can't go more than 4 hrs without amino acids. When they go too long without nourishment, like everyone, their bodies start to eat at their own fat and muscles. But, because SMA kiddos don't have much fat, their muscles are attacked and they become so much weaker than they already are, and it is a very very long road to recovering that muscle, if it is able to happen at all. A lot has to go into what could be a simple procedure for so many others. He will be admitted for a minimum of 3 days, so he and his surgery site can be monitored. If all goes well, he will be home by Wed, I believe. I will be with him the whole time, and Jon has had to take off work so that he can be home for Jack and for when we drive down and come back home.

We have so many appointments in Salt Lake between November and December. This surgery, a 2 week post-op, an appointment for blood work and strength test, a possible ortho referral because Henry more than likely has scoliosis, his fifth dose of Spinraza, a nutritionist appointment, and a possible sleep study (unless it gets moved to January). That's 6. 6 times we will be driving 340 miles round trip (a couple of them is twice for one reason, like the surgery. That means 680 miles for one appointment).

All of this is completely worth it. Because, if it weren't for the surgeries, the consults, tests, appointments, all of it, if it weren't for it all, we wouldn't have a greater chance for Henry to thrive, for him to survive, to live, to fight this horrible disease that could possibly take him at any time.

While we are doing everything we can to keep the fight going, we are struggling. We have already used every penny that has been so graciously donated to us, plus what little savings we have worked for, for all the previous trips and equipment and supplies we have needed for Henry. When Henry unfortunately was in the PICU for 2 weeks for RSV, viral pneumonia, and a collapsed left lung, that had used a good chunk of the little bit of savings we had left. This trip for his surgery will use what is left. We have applied for an assistance grant from Laughing At My Nightmare and if accepted, we would receive a $500 Visa gift card for travel expenses. We won't hear back for another week or so, but if we get it, it will help with most of the trips in the next 2 months, but not all. I am also trying to get an online popcorn fundraiser started that will give us 30% profit of the total sales. We are exploring options and doing our best to try to do as much of this ourselves as we can because we hate asking for help. We know that we aren't superheroes, we can't do it all, but we try. This update for GoFundMe will possibly be our last, because, again, we don't like asking for help, even though we could use it. Also, because I know after so long, people stop paying attention to the GoFundMe pages. And that's understandable. I just ask that if you can donate even a dollar, we would greatly appreciate it more than words can express. And if you can't, we understand. Life is hard and expensive for so many, especially with the holidays coming up. We would be just as thankful for you sharing Henry's GoFundMe and his SMA journey. We love you all and thanks for following Sir Henry The Great (SMA) Warrior!
His smile warms the coldest of days.
While admitted to PICU for pneumonia.
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Its been a while, but its time to update!
So Henry is 4 months old now!
Sadly, he has been sick for a week now. What is considered a common cold for us only last a few days. But for someone with SMA, it could last a week or longer and comes with severe fears and risks of it getting into their lungs and not being able to get it out, causing infection and potentially causing pneumonia. Pneumonia is a very serious life threat (and the number 1 killer to SMA) to people with SMA because they do not have the muscle strength required to cough forcefully enough to help clear the lungs and airway. Especially little ones, like Henry, who are SMA type 1 and so young. They're little lungs could collapse and there is little to no chance that they can be saved from that. Thankfully Henry is doing a ton better and is pretty much over being sick!! The only issue we have now is he's draining the excess mucus so it's causing him to choke and cough a bunch. Which means so much more frequent use of his suction and cough assist machines to keep on top of keeping him from getting anything into his lungs. But as far as we can tell he is in clear to continue with the scheduled surgery on Friday, September 22nd, for his g-tube (feeding port in his stomach) and the Nessen. A Nessen is when the surgeon wraps the upper part of the stomach around the bottom of the esophagus and is sewn to itself, to help prevent and severely reduce vomiting and aspiration. This will allow Henry to finally(!!) not have the feeding tube in his nose (which he's had for almost 4 months!) And it will also allow him to work towards not being on a 24/7 continuous feed with his pump. In other news, Henry has had all 4 of his "loading doses" of his treatment, Spinraza. His next treatment is in December and he will continue to receive it every 4 months for the rest of his life. He has gained so much strength. He is able to hold his head up for as long as 7 minutes now all on his own! He loves sitting up (at a recline of course) in his special chair that helps with posture and breathing. His favorite toys are crinkle books and O-ball toys. He loves peek-a-boo with a light blankie slowly going over his head to show his face. Smiles so big every time. He really is such a strong little warrior. And stubborn in the best ways possible. His surgery takes place on Sept 22nd and he will be in the hospital for a minimum of 3 days as long as all goes well. We will hopefully be able to get a room in the Ronald McDonald house not too far from the hospital while he's there and that is only $20 a night. If they don't have the room available we will have to get a hotel room and that will be $50-$80 a night. We have a little left in savings from what has previously been kindly donated to Henry's GFM, and we are hoping it is enough for the gas and hotel (or Ronald Mcdonald House) stay for this trip. We would appreciate everyone's thoughts and prayers for Henry and for his upcoming surgery and hospital stay. Please continue to share his story and his GoFundMe to spread awareness of Spinal Muscular Atrophy (SMA) and all it entails. Thank you all!!
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Check out this little guy! A day after his 4th treatment (8-4-17) he started opening his hands more, using his right arm a lot more and trying to gain control of it, and he is trying to grasp and hold on to toys! He's trying to turn his head to the right, gaining more control of head movement's and all movements, really. He's holding his head up for 15-30 seconds at a time. We put him on his side (either side) and he is able to roll back onto his back. He is just the strongest little warrior. Spinraza, along with his physical therapy, massage therapy, and being on the amino acid formula is what is helping my baby to thrive. These milestones may not seem like anything out of the ordinary for a developing baby, but for an infant with SMA, it is huge that he is able to hold his head up, kick his legs, turn onto his back, try to grasp. I'm not going to lie, it can be exhausting. It can be depressing. All of the what if's can make a parent worry like no other. Does that stop us? Absolutely not. The fear does not drag us down. If anything it adds fuel to the fire. It makes us try that much harder, do that much more, it makes us that much more determined. He still has such a long and rough road ahead of him but that doesn't mean that we won't try our absolute best to make every moment count and help him have as great a life as possible. We will see a dietician on August 10th, and have a G-tube consult on August 18th. From the consult, we will schedule surgery to place the g-tube and do a procedure called a Nissen. Nissen is taking some of the top of his stomach and wrapping and sewing it around the bottom of his esophagus, to help lessen the chances of aspiration and vomiting with the G-tube. The scary part of surgery is that Henry will be under anesthesia for it and with his lungs being so weak, there is a very real chance of complications. We would appreciate all prayers, good thoughts, and anything you do that helps you have faith, to keep Henry safe and happy and to continue to grow and become stronger through all of this. Please share his updates and his GoFundMe to keep everyone informed and SMA aware. Love to you all!
Holding his toy so well!
I live for his smile!
Nomnom while waiting for dose #4. 8-4-17
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On top of Henry being able to wiggle, move and hold his legs up on his own for short spurts of time, and being able to control his arms a little better now, there has been a HUGE improvement in Henry today! He is willingly turning his head to the right and using his right arm to bring his hand to his mouth!! He wasn't wanting to and was barely able to do that, even just yesterday! It was a challenge during physical therapy yesterday. I am so proud of my strong baby boy. Words can not describe. He is also on a new formula that is amino acid based and has 0 dairy in it. Dairy based formulas are difficult for SMA kiddos to digest. We were generously donated some cans of this formula from another family of SMA. I already see improvements in his level of comfort, he is more alert, he seems more at ease and even more happy than before. Just by switching to a formula that he doesn't have to use all or most of his energy in digesting! We are seeking to get this formula as a prescription from his doctor via reference from a dietician/nutritionist because it is a special formula and the cost is almost double that of a regular can of formula, and only lasts for roughly 3 days. Please continue to keep Henry in your thoughts and prayers as he continues down this journey. We are so grateful for him and all of his little miracle achievements he has shown so far. We can not wait to see how he does down the road. He has his 4th dose of Spinraza (his treatment) on August 4th. After that, we have an appointment with a dietician, and then the following week, a consult to go over getting Henry off the NJ Tube (through his nose) and getting a G-tube (feeding tube through the side of his belly). Once the consult is done, we will be scheduling the surgery to get him the g-tube!! So far, your generous donations have helped us with the down payment on the van, the trips to his appointments that are 3 hours away, a new toolbox (yes toolbox) that we use to store some of his medical supplies, and some toys and a playmat to help with his physical therapy and his message therapy that we do every day, 3-4 times a day. We also were fortunate enough to have his Papa T buy him an Urbini stroller that becomes a bassinet. It is essential that Henry lays flat as much as possible because his little lungs arent strong enough on their own to help him breath, and sitting up puts unwanted added stress to his lungs and stomach which can lead to being unable to breath and possible aspiration. Henry is 10 weeks old, just over 11 lbs, and 23 inches long now. He is growing so fast that I can barely believe it. I am one fortunate mama to have such a strong, happy, adorable little boy. Thank you all again for your support and donations. Please continue to share Henry's story and spread awareness of Spinal Muscular Atrophy. ❤
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$2,040 of $9,000 goal

Raised by 20 people in 8 months
Created June 8, 2017
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