Hi, my name is Nakayla, and I’m writing this for my 7-month-old daughter, Riley.

Riley was born with a rare and complex heart condition called Tetralogy of Fallot with pulmonary atresia and MAPCAs, along with DiGeorge syndrome. In simple terms, her heart doesn’t pump blood the way it’s supposed to. The normal pathway that carries blood from her heart to her lungs is blocked, so her body has had to create its own small, fragile blood vessels just to get oxygen where it needs to go. She was also born with a hole in the lower part of her heart, and her pulmonary arteries are smaller than they should be. These arteries need to grow strong enough to support normal blood flow, especially once the hole in her heart is repaired.

Riley’s journey began the moment she was born. She spent the first month of her life in the hospital while doctors worked to stabilize her condition. During that time, her heart rate was dangerously high, reaching up to 220 beats per minute, and they struggled to find the right way to manage it. She experienced a serious setback when a kidney infection was missed, which led to her being admitted into the ICU. During this time, Riley was unable to breathe on her own and had to rely on a ventilator.

Before Riley was able to come home, she had to undergo a stent placement to help improve her blood flow after that setback. The original plan had been to allow her to grow before taking the next steps, but due to her condition becoming unstable, the stent became necessary for her to safely come home. At a follow-up visit in December, it was discovered that her pulmonary arteries had not grown as expected. Doctors attempted to reopen the stent to improve blood flow, but the procedure did not go as planned. Riley experienced complications that led to bleeding in her lung, requiring a two-week stay in the ICU for recovery.

Since then, Riley has continued to need ongoing medical care. She had a stent placed in September and another in March after the initial stent was not providing enough blood flow to properly support the growth of her pulmonary arteries in preparation for reconstruction surgery. These procedures have helped give Riley time, but they are not a permanent solution. We found ourselves in a difficult cycle of waiting until her oxygen levels dropped or symptoms worsened before returning to the hospital for reassessment. Each visit carried uncertainty, the possibility of complications, and extended hospital stays.

Because of everything her body has gone through and the number of hospital stays, Riley has also begun to fall behind on developmental milestones, which has been incredibly hard for us to watch as parents. Even simple things like breathing, feeding, or resting can take more effort for her than it would for a healthy baby. Despite all of this, Riley continues to show so much strength. She is our little fighter, always pushing through with a quiet resilience that amazes us every day.

On August 7, 2026, Riley will undergo a major heart reconstruction surgery at Lucile Packard Children’s Hospital in Palo Alto, California. We were initially receiving care closer to home, but after going through repeated hospitalizations and uncertainty, we made the difficult decision to seek out a hospital that specializes in children with Riley’s specific and complex condition. We want to ensure she is receiving the highest level of care possible and a clear path forward. This surgery is life-saving and will help repair the hole in her heart while creating a more normal pathway for blood to reach her lungs, allowing her pulmonary arteries to take over and improving how oxygen flows through her body.

We will be traveling from North Carolina to California and staying there for several weeks, possibly longer depending on Riley’s recovery. During this time, I will be by Riley’s side as her full-time caregiver, and my husband will also be there to support her through surgery and recovery. This means we will both be away from work and without income. I had to leave my job last October to care for Riley full-time due to her medical needs, and I am currently in school working toward a better future for our family, but right now, Riley’s health comes first.

While we focus on Riley’s surgery and healing, our responsibilities at home don’t stop. We are asking for support to help us stay afloat during this time so we can be fully present for Riley without the added stress of falling behind financially. Your support will help keep our household stable, allow both parents to be there during this critical time, and ease the emotional and financial weight we are carrying.

If you are able to donate, we are deeply grateful. Every contribution truly makes a difference. If you are not in a position to give, we completely understand and ask that you please keep Riley in your prayers for a smooth surgery and a strong recovery.

Thank you for taking the time to read Riley’s story and for supporting our family during this incredibly difficult time. It truly means more than we can express.

With love,

Nakayla & Family