Mallory and Justin began their journey on Valentine's Day 2022 - their first official date. The wedding followed on June 1, 2024. First home? December 2024. And not long after - November 5, 2025 - little Maisie Jeannette was welcomed to planet Earth.

Maisie arrived in the world weighing just 5 lb. 7 oz. and spent several unnerving days in the NICU. After coming home for less than two weeks, she was readmitted to the NICU when her weight continued to drop.

And just over a month later, Maisie was admitted to Maria Fareri Children's Hospital to investigate the cause of her "failure to thrive." A nightmarish month of hospitalization followed, with Maisie developing coronavirus, norovirus, pneumonia, pericardial effusion, a UTI, and a raft of other dangerous conditions.

But a primary concern remained Maisie's inability to gain weight at the expected - or even hoped for - rate. To make sure she was receiving enough "Mom Juice" to enable growth, Maisie was equipped with a nasogastric feeding tube which she retains today.

In the months since, Team Maisie has enlisted an army of specialists - geneticists, endocrinologists, cardiologists, gastroenterologists, neurologists, nephrologists, speech-language pathologists (to assess feeding issues), and more - to monitor and alleviate as much as possible an ongoing array of medical concerns.

At last - after months of rejected genetic results due to the transfusions Maisie received in the hospital - the results were verified: Maisie was born with a genetic condition called PMM2-CDG.

PMM2-CDG is an exceedingly rare disorder that affects almost every part of the body. Caused by a mutation in a fundamental gene involved in the addition of sugars to proteins, it's associated with a broad spectrum of symptoms and can range in severity from mild to severe, disabling to life-threatening.

Hope is being offered by several high-tech innovations, including CRISPR gene editing, artificial genes, allele-specific oligonucleotide (ASO) therapy, and efforts to enable sugars to enter the cell and repair dysfunctional proteins. But for now, there is no cure - only treatments that address Maisie's symptoms.

Here's an animated video that explains PMM2-CDG and outlines the hope of one possible treatment. PMM2 CDG and a possible treatment

But long before a treatment can be approved, it must be thoroughly tested in laboratory animals, followed by carefully controlled clinical trials in humans. So hope is on the horizon...but we're not there yet.

There are currently several epicenters of PMM2-CDG research around the country, most notably the Icahn School of Medicine at Mt. Sinai Hospital, led by Dr. Eva Morava (Info about Dr Morava ). Maisie has been accepted into a study currently underway there; however, the hospital does not accept Mal and Justin's current insurance. Still, Dr. Morava has agreed to coordinate with the team of genetic specialists at Montefiori Hospital who will be guiding Maisie's care going forward.

As Robert Frost once wrote, Maisie and her mom and dad have "miles to go before [they] sleep." But in the words of Emily Dickinson:

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And NEVER stops - at all -"

Can you hope with us? Any donation, large or small, will go far in helping to ensure Maisie's comfort and care until a treatment - or perhaps a cure - can be found. We truly believe it won't be long. But however costly and scary the journey, we're up to it.

THANK YOU from the bottom of our hearts -

Mallory, Justin, Grammombo, Gido, siblings, cousins, nieces & nephews, and all who love this little angel.