Charlotte Victoria, A story of hope, grit, perseverance

I feel lead to create this goFundme for my friend Mary and her daughters Charlotte 6, and Penelope 8. I have known Mary for over 20 years, As a person she is as tough as they come. As a Mother she is nothing short of Fierce... and right now she needs help, This is our sincere SOS. Mary has written about Charlotte's diagnosis below. I want to tell you about the sweet family. I ask that if you feel lead to give that you do so generously knowing that this need is Great... Mary is a single mom whose job is taking care of Charlotte. The previous administration cut Mary's hours in half... She is unable to get a "normal" job. Charlotte requires trained care 24 hours a day. A typical day for them is not at all what we would consider typical. Until February Charlotte was in school a few hours each day with a full time caregiver. Since Charlotte's surgery the beginning of February she has been homebound. Mary wakes nightly to the sound of alarms as Charlotte's heart rate drops... She is beyond exhausted. These three rent a modest home on a horse farm in our town, This farm has been the saving grace for Penelope as she has a safe place to run and play while Mary is inside caring for Charlotte. Penelope cleans the tack room and does other various chores around the farm in exchange for riding lessons. Penelope is a straight A student and we lovingly refer to her as the feral farm girl.

Charlotte was diagnosed with Spinal Muscular Atrophy Type 1 ( SMA) when she was 8wks old. SMA is a genetic disorder causing progressive muscle weakness and muscle atrophy due to damaged motor neurons. The disease progresses rapidly, affecting the ability to move, swallow, and breathe. She was given two years to live.

In January of 2019, she received Gene Therapy, now known as Zolgensma. This drug helped to stop the progression of the disease.

Feeding tube since infancy

Uses noninvasive ventilator 15+hrs a day to help give her a break from the work of breathing.

-Gets sick easily and is unable to handle illnesses like a typical child. -A simple cold could kill her or put her in the PICU (pediatric ICU)

-Receives Zometa infusions every 6 months for weak bones

-December 2022 MAGEC Rod surgery to correct 115° scoliosis curve.

-February 2025 MAGEC Rod replacement surgery (replace with bigger construct)

-March 2025 seizure. UVA trip to ER/CT scan of head found a mass on the left side of Charlottes brain.

-Charlotte continued to have dizzy spells and fatigue for over a week.

-Scheduled for an MRI with contrast. She will need to be intubated (intubation is always a risk due to her restrictive lung disease and ongoing muscle weakness).

-Charlotte is now sick. MRI needs to be rescheduled to a month after she is at her baseline.

-She’s missed 2 months of school

I thank you for reading. Gofundme asked me to share what Mary will be using the funds donated for, Diapers, pedialite, food, rent, car payment, clothes, gas, various other medical supplies needed for Charlotte to sustain life. Trips to UVA for care which can be anywhere from 1-3 times or more per month. Every single penny received will go to Mary and be used responsibly to enhance and support her family.