Support for the Peña Family

My name is Araceli, I am Aiden's mom and caregiver. My husband’s name is Jose. Aiden has an older brother named Miguel. I will be sharing our son's story and his fight with ADA2 DEFICIENCY. He was born on May 21, 2020. He just turned 3 this year. Aiden has been undergoing medical problems since he was born. In January 2021, we decided to change hospitals. Getting a referral to the Children's Hospital of Los Angeles (CHLA). His new hematology doctors wanted Aiden to get another Genetic test more in-depth. Finally, in April 2021 we received wonderful news. We had a diagnosis, ADA2 DEFICIENCY. This is a rare genetic disorder not seen very often. Aiden was the second case seen in CHLA. We had to keep him isolated from the world to avoid any infection or Covid-19. But as safe as we were, Aiden continued getting sick and infections due to being immunocompromised. Aiden was not getting better. He could no longer eat on his own. An NG tube was placed to help him eat and help his little body stay hydrated. After multiple blood draws and two unsuccessful picc lines, Aiden had to get a central line. Until May 2022, he was admitted into CHLA due to having breathing issues and febrile fevers. Aiden and I have been living in CHLA since May 15, 2022. His Bone Marrow Transplant was scheduled for June 6th, 2022. But was postponed due to Aiden having high fevers and testing positive for Rhinovirus. This was UNEXPECTED. He was on antibiotics and IV fluid for several weeks. He had many tests and procedures done to help find the reason for this new infection. He also needed to be connected to an oxygen machine. He was put in isolation for 6 weeks. Unable to keep food down or liquid, Aiden became very weak. He wasn’t able to walk. Aiden was in and out of the PICU due to his breathing continuing to get worse. Aiden was working so hard to keep his oxygen level stable. He was placed on high alert and continuous high-flow oxygen therapy, CPAP, and intubated for support. Finally, after 3 months, we found out what was in his right upper lung. Liquid from having paralyzed vocal cords. At the beginning of September 2022, Aiden’s oxygen dropped into the 50’s. He was rushed back to the PICU. Being parents to a child with a compromised immune system and a genetic disorder is very difficult. Even harder with bilateral vocal cord paralysis. It was not easy staying positive when he was constantly having trouble breathing. During this hospitalization stay, I never left his side. Being apart from my other son was heartbreaking. After being hospitalized for almost 4 months on September 2nd, 2022 Aiden had a procedure done to place a G-tube and remove his NG tube. He also had his third bronchoscopy. The bronchoscopy showed severe swelling around his vocal cord box and now both of his vocal cords were paralyzed. As much as the surgeons tried and hoped not to bring him back intubated. Aiden needed support to breathe. On Sunday, September 4th, the ear, nose, and throat doctors came to inform me of the next step for him. Regarding his chronic breathing problem. This was one of the hardest conversations Jose and I had. Not only were we both caught off guard, our hearts were breaking for our baby. Due to all the swelling and trauma. We only had one option: TRACHEOSTOMY! This would be the only way Aiden would be able to breathe on his own without being intubated. Jose and I never expected to be put in this situation. As much as we wanted a second opinion, there wasn't. We decided to move forward with the procedure. We couldn’t imagine our son's life being intubated and possibly losing him due to breathing problems. Due to the tracheostomy, the donor became unavailable for a few months. Aiden had to be in isolation due to getting sick even while in the hospital. By this time we had been living in CHLA for months. We celebrated all the holidays, birthdays, and special accomplishments in room 4224. Jose and Miguel would try visiting when they could. We wanted Aiden to have a normal life even if it meant being hospitalized and isolated away from other children. After constantly asking our team about his transplant date. We got answers. Aiden finally received his Bone Marrow Transplant in February 2023! After his transplant he became ill. He had to stay in the hospital past the 100-day mark due to GVHD. Chemotherapy was very hard on his body. He wasn’t gaining weight and had to be put on fluid once again for months. We are currently still living in the Ronald Mcdonald House in Los Angeles. Until Aiden is no longer considered immunocompromised due to his bone marrow transplant. He is slowly starting to speak again with the help of speech therapy. He is now able to eat on his own and take liquids by mouth once again. We are currently waiting for more cells from the donor. Aiden will need another infusion to help his bone marrow produce T cells. Although, we are still unsure when we will be able to return home. Aiden continues to be the happiest kid on this earth. He is such an inspirational kid.

During all this time here, I have become mentally drained. It is a very overwhelming feeling having a child that is severely sick. Not being able to have a normal life like other kids. It has taken a toll on my mental health. I’ve been dealing with depression for many years but this has been the most difficult time. It has not been easy having to be away from my other son Miguel or my husband. At times I have felt as though I have failed him as a mother. Missing out on a whole year of his life. Not knowing how to explain to him that Mommy and brother need to be away without hurting his feelings. Having to put Miguel into therapy to help him understand the reasons why we are unable to be home. Trying to teach him coping skills at such a young age. Is very difficult and painful.

Emotionally, I feel alone at times. Not having the support of my husband Jose or my immediate family. Not being able to just hug them and cry on their shoulder during difficult times hurts me. But regardless of how I felt I never gave up on being there for Aiden. Even on all my bad days dealing with my mind. I remembered the reason to keep going was for him and my family.

During this journey, I had to quit my job. While Jose worked for his current employer. But a few months passed by and all our bills started to fall behind. Aiden and I were no longer living at home. He had been admitted to CHLA. This became our new home. Although Jose worked, we just couldn’t make ends meet. He was working and trying his best to work as many hours as possible to make sure our rent and bills got paid on time. But having to constantly leave work due to Aiden having emergency procedures or health problems wasn’t helping. Constantly having to think of how we are going to pay bills every month is stressful. We continue to stay positive during this hard time. It hasn't been easy having to provide for two different households. Living in Los Angeles has not been easy either.

A whole year and 4 months have passed by. This all has unfortunately put a significant financial strain on both of us. These funds will help us pay for medical, pharmaceutical, transportation, caretaking and general living expenses during this process, so we can focus on Aiden's full recovery. No donation is too small. Thank you to everyone from the bottom of my heart for all of your love and support!

I also ask you to pray for Aiden while he is in recovery and our family.

Thank you ♡

Araceli Peña