Help Support Lyssa’s Ongoing Medical Journey

7/5

Update from Lyssa-

I don’t have the energy or words to explain everything that’s happening right now. I’ve been in and out of emergency room, I’m no longer able to use my feeding tube, I had to have it removed, I haven’t had nutrition for the past 7 days. I’m in a medical and financial crisis that has reached a breaking point. On top of fighting for my life, I’m about to lose my car, my insurance, and with them, my ability to access the care that is quite literally just barely keeping me alive. I had a brief taste of hope when I finally got my feeding tube, I started gaining a bit of weight and started thinking it might bring some stability. But instead, it became just another complication added to my ever-growing list of medical issues. Things have spiraled, and I’m barely holding on. I have surgery scheduled for 7/14 to place a Port to hopefully help bring me back from the edge of full body failure. I need to be able to attend my life-saving appointments with specialists, undergo multiple procedures in the near future, receive hospital care, endure endless testing, without transportation and insurance, that all becomes impossible. I have to rely on my failing body to transport myself, I have no other options. I’m absolutely terrified of what will happen if I lose my only access to that care. I hate asking for help. It’s degrading, dehumanizing, and I’m so tired of having to trade pieces of my private life and dignity just to survive. But I don’t have any other choice. If you’re able to help, by either donating or sharing this, please know it genuinely means the difference between survival and losing everything I’ve fought so hard for. Thank you.

Update 5/14

Lyssa had an appointment in Boston yesterday with the GI team. Things haven’t really changed much at all. They just told her that the feeding tube will stay in place for another 4-6 weeks after they replace this one in a couple of weeks. She is having a hard time tolerating the feeds themselves but she is slowly gaining weight. It’s still going to be a long road ahead full of drs appointments and ongoing medical care, testing, and procedures. We got her car payment and insurance taken care of for May with all the donations so far!! Thank you all so much! We are more than grateful we still need $ for gas, medical supplies that insurance doesn’t cover, and her car payment and insurance will be due again in a few weeks. Please continue to share and no donation is too small! Thank you all for the continued support. We love you! 

Update 5/2 

 Lyssa finally has her pump and has worked her way back up to her full feed rate. After being home for over a week, this is a big relief knowing that she is stabilized at home and receiving the nutrition she needs. There’s a lot of adjustments and learning happening with all of this, but finally having the proper equipment relieves so much stress! Her energy levels are still extremely low and there’s no word on when the NJ tube will no longer be necessary, but she is taking things day by day and appreciating the ability to rest at home with proper nutrition.

Update 4/27  

Lyssa is now home, and slowly getting her medical supplies needed, for the next leg of this journey. 

We are still waiting for the pump she needs for the continuous feeds. She been administering them by hand with a syringe in the meantime. 

She is slowly getting stronger, but the psychological battle is also a really hard part of this too. Please keep her in your thoughts and prayers, as I have to leave her tomorrow and head back home. 

Update4/24

The tube is in the right place now after a long day of pain and waiting for radiology to pull the guide wire after getting it in place. 

The great news is she’s going home. She will continue tube feeding for at least 4 weeks and hopefully they figure out a long term plan in the meantime. 

Please keep donating and sharing!!! This battle is far from over for her and she needs more support than we are able to provide at this time. 

We truly appreciate the donations that have come in so far. Thank you all

Update 4/23 

Lyssa had a procedure done today that was supposed to advance her NJ tube further into her intestines and then go home. Instead more trauma occurred and the tube is now not in the right place so she has to have yet another procedure and has to stay longer. She is completely heartbroken and discouraged even more. We are doing our best to stay strong and positive! 

I am starting this GoFundMe for my daughter, Lyssa. Those of you that know and love her know that she has the most positive outlook on life that I’ve ever seen in a person! She is always happy and trying to make everyone she meets just as happy and positive as she is! She has such a love for life and living that what has been happening to her for quite a while now is completely devastating.

She has always had health issues. From birth through her teenage years, it was a struggle with her weight, but as she got older, her dysautonomia and genetic issues have gotten worse. Now she’s in her mid-20s, and things health-wise are out of control. She has been steadily declining, especially for the past year, and she has been admitted to a hospital in Boston to hopefully get some answers and a plan for long-term care and management of her conditions. She just had an NJ tube placed and is receiving nutrition now. She’s on day 1 of that and is already getting color back in her cheeks and feeling a bit better. She will have to have home care when she is released, and the end of this strenuous road is nowhere in sight.

Before things took a turn for the worst, she refused to let her health take over and started a small business, making crochet goods. She worked hard to support herself through this decline, but despite the effort, she can’t even do that anymore. She just doesn’t have the strength.

She has applied for disability and is waiting for the lengthy process of all that to happen. In the meantime, her car payment is severely overdue, her insurance is due, rent and everything else doesn’t stop just because life happens, and it has come time to ask for help. We are starting this for her in hopes of relieving some stress, at least financially, for her during all of this. If you can’t donate, thank you for even reading this, and please send some positive thoughts or healing prayers or whatever it is you believe in to get her well and healthy again! If you can only send $1, send $1. It won’t be appreciated any less than $5! Every little bit helps at this point. Thank you for any and all support you can give. Living with chronic conditions is hard, but losing your independence and everything you have worked so hard for is just heartbreaking. Please help us help her