This is my niece Stevie (AKA…My Princess VV). Anyone who has met Stevie knows how sweet and unique she is. Words cannot describe this precious little angel. She will soon be celebrating her 8th birthday on January 7th. Stevie has an older brother CJ whose 10 years old and a younger sister Coco who will be turning 5 at the end of December.
In 2019, Stevie had her gallbladder removed because polyps had developed on it. We didn’t know this at the time, but pediatric gallbladder removal is most often a sign of Metachromatic Leukodystrophy (MLD).
Stevie worked hard after her procedure to Try and catch up in school. By the end of her 1st grade year she had conquered her goal of working on her pretty handwriting- we were all so proud! My sister started to notice when Stevie went back to school this August that it was very difficult to write. Reading was a struggle and simple things were hard or impossible for her to complete. Stevie’s penmanship became illegible and we started noticing starring spells along with gait and gross motor issues. Labor Day weekend, my sister and her family went camping at the beach where Stevie had a seizure on the water. Stevie was disoriented and confused and seemed to be completely unstable on her feet. Christina made an appointment with Loma Linda Medical Center to confirm and test the frequency of seizures with the hope of an explanation and treatment for her to live a healthy and happy life.
Stevie’s EEG was completed October 2nd, and following next was a MRI With lumbar puncture on October 26th. My sister and her husband (Christina and Chris) received the life changing news the following day.
Stevie was diagnosed with Metachromatic Leukodystrophy (MLD). An extremely rare autosomal recessive genetic disorder. She falls in the Juvenile category which is being diagnosed between 4-12 years old and less common. It occurs in only 20-30% of people with MLD. All forms of MLD are extremely progressive. Essentially, it results in the loss of all motor functions (speaking, seeing, moving, etc.) and is eventually fatal. Thankfully, they were able to get Stevie into the NDRD clinic at the Children’s Hospital of Pittsburg on Monday November 30th for an extensive 3-day analysis of progression.
Stevie is scheduled to have chemo and a bone marrow transplant on December 14th. They must relocate to Pittsburg for 6 months since she needs to be closely monitored to ensure her body accepts the transplant and reaction to chemo. CJ and Coco will be tested as well. Donations will be used to help with the financial pressure of significant medical expenses and housing.
From the bottom of our hearts, thank you!
- Holly Wik
- Jen Little
- Andrew Estrella
- bonnie velasquez
- Eric / Brittany De Jager
Organizer and beneficiary
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