<div>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.
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<div>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.
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<div>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.
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<div>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.
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<div>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.
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<div>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.
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<div>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.
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<div>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.
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<div>Here's an animated video that explains PMM2-CDG and outlines the hope of one possible treatment. <a href="https://www.youtube.com/watch?v=oIMqE5QBDNM" target="_blank" rel="noreferrer noopener">PMM2 CDG and a possible treatment</a>
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<div>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.
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<div>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 (<a href="https://profiles.mountsinai.org/eva-morava-kozicz" target="_blank" rel="noreferrer noopener">Info about Dr Morava</a> ). Maisie has been accepted into a study currently underway there; however, <strong>the hospital does not accept Mal and Justin's current insurance</strong>. 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.
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<div>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:
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<div>“Hope” is the thing with feathers -
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<div>That perches in the soul -
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<div>And sings the tune without the words -
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<div>And <strong>NEVER</strong> stops - at all -"
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<div>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.
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<div><strong>THANK YOU</strong> from the bottom of our hearts -
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<div>Mallory, Justin, Grammombo, Gido, siblings, cousins, nieces &amp; nephews, and all who love this little angel.
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