Help 14-Year-Old's Urgent Heart Treatment

Update 12/18

Maleynda was released into housing Monday night. She is doing well but is struggling with some of her medications. We now have 12 weeks of living here. It is incredibly expensive living here so I appreciate all of the donations to help with the expenses. We have a lot of appointments in the coming weeks. Tomorrow she goes for her first biopsy, echocariogram, and blood test since being discharged. Still a lot of stress and worry but that will likely never go away.

Maleynda has been doing very well and we are expected to be discharged Monday. We will be moving to housing but at this point there is no available housing for us. We will be moving into a hotel and each week we will have to check for available housing for us. The most important thing is that Maleynda is doing well and we will hopefully be home in 12 weeks.

*Update 12/42024*

Maleynda has had her heart transplant surgery and is now in the ICU recovering. The doctors have said that she is doing very good. They are working on adjusting medications to get her where she needs to be-all things that are normal this soon after surgery. We are with her and making sure that she knows she is loved and that she is doing well. One day at a time but still counting the days/weeks until we can come home.

*Update 12/3/2024*

We received notification last night that they have found a heart for Maleynda. As of this moment, her surgery is scheduled for midnight tonight. We are excited, terrified and everything in between. The surgeons have told us that she will be fine and her transplant will be one if the easier ones. It is going to be a long, exhausting night for Kenny and myself.

*Update 11/19/2024*

Maleynda was officially listed on the transplant list this past Friday. Now we wait for a donor heart to come in. Her heart continues to have constant runs of irregular beats, especially at night while she sleeps. It is completely terrifying to know that her heart is the worst while she is sleeping. We hope and pray that a heart comes soon.

We have had several rounds of testing that is required for heart transplant. The genetics team has said that this was caused by a very rare genetic mutation and that heart transplant is the correct route to save her life. The doctors are meeting tomorrow and as long as all testing has been completed and they have their data, they will be able to put her on the transplant list. There is a possibility that some of there data will not be available before their meeting and will have to wait until Thursday. She is expected to be placed as the highest priority on the transplant list as she needs a heart as soon as possible.

I want to express my gratitude to everyone during this time. I never imagined that we would be here waiting for a heart transplant. I sincerely appreciate everything that has been done by everybody. I will post another update as soon as she is on the list.

UPDATE:

We are still in Boston Children's Hospital and will be for quite awhile. Maleynda's heart is in bad shape & has not responded well to medication. The heart muscle is very damaged and there is nothing that can be done to repair it. Her heart rhythm improved slightly but still has "extra beats" that if not monitored continuously, can be life threatening. Because of this, they cannot safely discharge her to come home. She is being put on the list to have a heart transplant. We have waited to tell everybody this as the doctors asked us to wait to tell Maleynda this news. We finally broke this news to her today and of course it was devastating. Our lives have been completely turned upside down. We can only hope that the donor heart comes quickly and the long road of healing can begin. We are both struggling with living in a hospital room, without the rest of our family, friends, our pets, and our home. Not a day goes by that we both don't cry. She (we) have a very long, terrifying road ahead of us.

**The below was created and written by Maleynda's 10 year old sister. She is home worried and missing her big sister. Maleynda has a very long road ahead if her to help her heart problems...things I cannot even write at this time as it is still too raw and sad for me to think of. We love her and want and need to bring her home. Right now, she is at Boston Children's Hospital until she is well enough to come home.

Submitted by Aley:

My sister is 14 years old. She stayed home from school because she was recently diagnosed bronchitis and she went to the doctors a normal check up to see how the bronchitis was going. They just got home from the doctors and the doctors called that she needed to go to the emergency room immediately.. she went and then had to go to a bigger hospital in another state. She stayed there overnight.. and the next morning she was airlifted to the Best children’s Hospital in the US. Because her heart muscle had thickened. A lot of other problems. Me and my families need help to pay for all of the hospital bills.. including other bills. And we’re asking for help to pay these hospital bills.

and if you can help, it would mean the world to us.