Arianna’s LGMD Heart Fight

Hello! I am Stephanie, Arianna’s Aunt (Aunt NeNe to be exact), and I started this for my sister, Nikki. By now, many of you have been following Arianna's story, but for those of you who do not know, here it is—

❤️‍Long post but please read!!❤️‍

Asking for all my prayer warriors to please lift my beautiful niece, Arianna, up in your prayers (& my sister, Nikki ❤️). She and her sister, Abby, were both diagnosed as young children with LGMD. For those of you who do not know what this is, here is the definition:

Limb-girdle muscular dystrophy (LGMD) is a chronic, rare, and genetic umbrella term for a group of muscular dystrophies that cause progressive muscle weakness and wasting in the shoulders, hips, upper arms, and upper legs. The disease can affect people of all ages, with symptoms varying from person to person, even within the same family. LGMD is characterized by weakness that primarily affects the proximal muscles. In some types of limb-girdle muscular dystrophy (LGMD), the heart can be affected, leading to weakness of the heart muscle (cardiomyopathy) and/or abnormal heart rhythms, which can increase the risk of complications like palpitations, fainting, and sudden death.

I know, terrible right? Fast forward to now... Arianna is 18 years old and has been suffering heart issues. Over the past few years, it has drastically gotten worse. She went into Duke on March 12th to have a heart cath done. This led to some disheartening news for Arianna and all of us as her family.

The pressures in her heart and lungs were very high. They kept her hospitalized and on IV medication to get it under control. But the medication did not help… they began giving a higher dose of Lasix but are also going to give another injection that he has called rocket fuel for her heart, which should work faster to get the fluid off of her heart. Basically, she really needs a heart transplant which she has to be evaluated for. Also, an LVAD, which is a left ventricular assist device. She is going to need the LVAD, even if she doesn't qualify for a transplant. They have now put a balloon pump in her heart to help alleviate pressure. She will have to be completely bed-bound. She is now in ICU and handling the pump extremely well! Her pressures are coming down, which is relieving her kidneys and hopefully going to allow them to do their job. The hospital is working on getting approval for the LVAD with insurance, and we are looking at the surgery at the beginning of next week. Right now, she is resting comfortably. We have now been told she will have the LVAD surgery tomorrow morning (03/18/25). We are looking at 10-14 days in the hospital after that.

A left ventricular assist device (LVAD) is a pump that we use for patients who have reached end-stage heart failure. We surgically implant the LVAD, a battery-operated, mechanical pump, which then helps the left ventricle (main pumping chamber of the heart) pump blood to the rest of the body.

❤️‍For those of you who don’t know Arianna... I’ve never met such a young adult with such a gentle, genuine heart & soul. She has always been so positive with a smile on her face, even now... she continues to remain positive and keep that beautiful smile on her face. I cannot seem to wrap my head around why this is happening, and I don’t think I’ll ever understand it, but please, pray and feel free to share this post to have as many prayer warriors as possible.

I have put this together to help with the costs of travel back and forth from Durham and home (Newport) for Nikki, such as gas, food, stay, missing work, assistance for her other 3 children, etc. Any donation is greatly appreciated from the bottom of all of our hearts.

Thank you for taking the time to read