Hello everyone, my name is Alahna Russell.

I’m creating this GoFundMe for my precious niece, Addy, and her parents, my brother Austin and my sister-in-law Makenzie, who are facing an incredibly difficult journey. Asking for help is not something our family is comfortable with—we are usually the ones trying to handle everything on our own. But in this situation, help is not only wanted… it’s truly needed. If you are unable to donate, we simply ask that you share Addy’s story and help us spread the word.

Our goal is to get her into a higher-level care facility with a team of specialists who are experienced in rare, medically complex pediatric cases. Specifically The Children's Hospital of Philadelphia (CHOP). They have a unit dedicated to 22q babies. The 22q and You Center is the largest center of its kind! The donations received would also help to cover the cost of travel, hotel stays, and help with homeschooling for Kennedy. 

Rare—that is the perfect word to describe Addy. She is literally a 1-in-over-10-million baby. Possibly medically unique as there have been no known published cases with this combination of diagnoses. And with that, I want to share her story with you, told from Makenzie’s perspective.

Addy’s Journey

During my pregnancy with Addy, everything appeared completely normal. Every routine prenatal scan came back reassuring. We were told she showed no signs of genetic or structural problems. We walked into the hospital the night before her scheduled c-section expecting a typical delivery, a typical cry, and a typical newborn experience.

But the moment Addy was delivered, everything changed.

As soon as she was born, the NICU team rushed her to the incubator waiting beside us. She never let out a strong cry. I remember lying there, begging for someone to tell me what was wrong with my baby. The NICU nurses stabilized her and quickly transferred her to the unit, placing her on oxygen and monitors. After several failed attempts to place an NG tube, they inserted an OG tube so she could at least receive nutrition safely.

Once Addy was in the NICU, the days felt like one step forward, two steps back. Any progress she made seemed to be followed by a setback. She struggled to wean off oxygen. She would “de-sat,” dropping her oxygen levels during the smallest attempts at oral feeding, and sometimes even while she slept. Looking back, these were the earliest signs of the extremely rare and complex conditions we were only beginning to uncover.

After eight days, we finally learned to pace-feed her in a way that kept her oxygen steady. We thought we were almost ready to go home. But on the very day they told us we might be discharged, the NICU team decided to run a head CT—just to be safe.

That CT scan saved her life.

If Addy had been sent home, she could have died from silent aspiration or simple inability to breathe through her tiny, obstructed airway. That reality is something no parent should ever have to imagine. But because the scan was done, her condition was caught just in time. Not long after, I got the call: Addy had unilateral choanal atresia, and she needed emergency transfer to a children’s hospital for higher-level care.

That evening, she was airlifted to the Children’s Hospital of New Orleans (CHNOLA), now the Manning Family Children’s Hospital. And that is where our world expanded into a maze of rare diagnoses we had never heard of.

When Addy arrived at CHNOLA, the specialists immediately noticed her underdeveloped chin and began deeper genetic and structural evaluations. Their testing revealed she had 22q11.2 deletion syndrome (DiGeorge syndrome)—a diagnosis that changed everything. One by one, new specialists entered her room, each discovering something new: congenital nasal pyriform aperture stenosis (CNPAS), severe hydronephrosis with UPJ obstruction, two patent foramen ovales (PFOs), and a solitary median maxillary central incisor (SMMCI)—all on top of the 22q deletion and choanal atresia.

With every new diagnosis, it became clear that our lives had permanently changed. The days of assuming everything about our baby’s health would be “normal” were over. We suddenly found ourselves thrown into a world of medical terminology, alarms, specialists, and fear.

Addy spent eight days in the St. Francis NICU and twenty-nine more in the CHNOLA NICU—thirty-seven days total.

During just her first month of life, she endured:

5 different rare diagnoses

2 surgeries

87 lab tests

16 different scans

Instead of holding my newborn at home, I was learning the sounds of different monitors, memorizing waveforms, and waking up every few hours not to nurse but to pump—packing labeled bottles and bags of milk to hand over to nurses caring for my baby in ways I physically couldn’t. Addy’s big sister spent this time asking where her baby sister was, wanting to see pictures, and waiting for the day she’d finally get to meet her.

Addy eventually had a g-tube placed after two swallow studies showed she was aspirating every drop she tried to drink. Her dad and I were trained quickly on how to care for the g-tube and manage her medical needs.

But being discharged from the NICU was not the end—it was only the beginning.

Since coming home, Addy has gone through six additional surgeries, countless scans and labs, and three different PICU stays when sickness caused her to need supplemental oxygen again. She has faced one obstacle after another, yet has remained incredibly strong and unbelievably happy through all of it. She is the definition of resilience.

Her story could have turned out very differently if that first CT scan had never been done.

Rare does not mean impossible.

It simply means uncommon. And if your heart tells you something is wrong with your child—no matter how small the signs seem—advocate, ask questions, and push for testing. If both NICU teams hadn’t pushed to investigate every concern, our Addy girl wouldn’t be where she is today, and we are endlessly grateful.

But now, Addy needs the next level of care—care from a 22q-specialized children’s hospital—because new issues are emerging, and she deserves the absolute best chance at long-term health.

And that is why we continue to fight for her.

This is Addy’s journey—and it’s only just beginning.

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As of today, these are all of her diagnoses:

22q11.2 Deletion Syndrome (Severe)

7q21.11 Duplication (Mild)

Pyriform Aperture Stenosis

Unilateral Choanal Stenosis

Hydroephrosis with Ureteropelvic Junction (UPJ) Obstruction

Solitary Median Maxillary Central Incisor

Right Aortic Arch with Aberrant Left Subclavian Artery (Causing vascular ring around esophagus and trachea)

Left Ventricular Hypertrophy

Dysphasia (Resulting in g-tube placement in NICU)

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We truly need your help. Please, even if it is just five dollars, prayers, or sharing this, we would be forever grateful. EVERYTHING helps! #AddysJourney