Alexus was admitted back into the ICU as of 3/24.
She went in because she was having trouble swallowing, which was blocking her airways. Her loss of muscle strength in her mouth has made swallowing, and talking difficult for her. Once she got to CHOP, they tried to help clear her lungs. While they performed routine things, Alexus was not able to breathe. They moved her to ICU, and she was put on the highest level of oxygen as they deemed her in respiratory failure. Doctors have said that they are very worried that she may not make it back home as her SMA has progressed significantly, and Alexus has been able to tell us that she is in a lot of pain, and she is very afraid.

Alexus has been in stage 3 kidney failure for some time, along with pancreatitis and a new diabetes diagnosis, from her 2024 ICU admittance. But she preserved through all of that, and made it home for a little over a month. I say all of this to say, because of all of her conditions, there are a lot of complications and roadblocks on things that can/can't be done.

With this ICU admittance, her tests came back negative for any sickness, infections, etc. There is nothing to "treat" as her body is very tired from the past trauma and progression over the past year.

Alexus has 5 final wishes that all staff and family have to respect, as these are Alexus' choices for her body. She does not want to be intubated. Her body has been through a lot of pain and suffering, and it is even more stressful on the body to go through intubation.

DNR patient. She has chosen not to be resuscitated if she codes. She does not want her body to go through that stress, pain and even more suffering.
She is an organ donor - and the partial reason she does not want to be resuscitated is because she wants to preserve her organs, to help as many people as possible. She is THE most selfless person we know. She wants as much of her body to help someone in need as possible.

I'm choosing not to add anymore because I don't want to believe we are at the point where more information needs to be said.

Right now, the hospital staff is keeping her comfortable, and monitoring her stats to see if her body will pull through this, and come out of this. It is an absolutely brutal and excruciating time, just waiting to see if we will get more days, more months or only a few hours with her. We are praying for a miracle. Alexus does wake up here and there, but with pain, and fear. At this time, we are praying she choses to fight, that her body choses to live on, and that Jesus gives us more time here on this Earth with her. During this time, we are hoping to raise money for whatever might incur, but including the family's bills for the month of April. It's one less thing this family should have to worry about. We will not lose our faith, we will not lose our hope, we will not lose our strength, for as long as she is breathing.

Alexus is now home from the Children's Hospital of Philadelphia ICU after 436 days. 🎊

As we prepared for her arrival on February 18th, we began cleaning out her home with her family, and found black mold on two of the living room walls. Gratefully, the mold was surface level so it was safe to replace the walls without spreading the mold or worrying about other issues. ABC Drywall of Collingswood generously donated that piece of the renovation. For the rest of the house, local businesses replaced the floors, painted and repaired walls, and helped move and throw out furniture throughout the house. We finished renovations in under 100 hours thanks to the support of the community. This total renovation was necessary to bring Alexus home to the safest environment as possible. Alexus was diagnosed with SMA type 2 at the age of two years old. This disease robs the body's muscles of its strengths, and completely compromises the immune system. She also has a brother with the same diagnosis, and their family has struggled financially over the years. Alexus officially came home on February 25th, 2026. Please continue to share her story and keep her in your prayers as she is on palliative care.

Our nonprofit has fundraised to get these repairs done, and support their family throughout these most difficult times. Without us, without you, this family would be living in unimaginable conditions. We cannot thank you enough as we continue to finish Alexus's room and small repairs around the house.

Fighting for Alexus' Life: Praying for Healing

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