Help Izzy Get Open Heart Surgery
Donate Any Amount and Get a Free Year's Subscription to Not My People's Publication
This is my niece Izzy; she has Williams Syndrome and needs open heart surgery. The initial cost, including lost work, is $10k.
Anyone who gives any amount to this will get a year’s free subscription to
Not My People’s Publication.
Donate, screenshot, and PM me your email to redeem.
From My Sister Candace:
Izzy’s Aortic Repair & Healing Fund.
Dear Friends, Family, and Community,
Our sweet Isabella is a true warrior. Diagnosed with Williams syndrome, Izzy faces unique daily challenges with incredible joy, but now she needs your help.
Due to Williams syndrome, Izzy has had aortic stenosis since birth which until recently has been growing with her. In the past month we have learned that there are two areas that have stopped growing and now require major, life-saving open-heart surgery to repair her aorta.
We are preparing for a difficult, stressful journey ahead. She will need to spend at least 10 days in the hospital, followed by an 8 to 12-week recovery period. During this time, our lives will be entirely focused on her healing. I (Mom) am her primary caretaker and will be by her side with no paid leave, while her Dad will be taking partial-pay FMLA.
While we are doing everything we can to be strong for our little girl, the financial reality of this medical crisis is overwhelming. With both of our incomes severely impacted, we are humbly asking for your support to help us cover our rent, utilities, groceries, gas for doctor visits, and essential living expenses during her long recovery.
We are extremely grateful for the team of doctors at Hershey Medical center that are going to be performing Isabella’s surgery and handling her care while we are there.
Any contribution, big or small, will relieve an immense weight off our shoulders and allow us to focus 100% of our energy on being there for Izzy. If you cannot donate at this time, we completely understand—please simply share our story and keep our girl in your thoughts and prayers.
We don’t have a specific date for the surgery but the surgeons secretary will be calling us this week to make an appointment.
Thank you from the bottom of our hearts for your love and support, we will make updates as we know more.
With love and gratitude,
Candy and Josè
What is Williams Syndrome?1
Williams syndrome is a rare genetic disorder caused by the deletion of genes on chromosome 7, leading to distinctive facial features, cardiovascular issues, and developmental challenges.
Overview
Williams syndrome (WS), also known as Williams-Beuren syndrome, is a neurodevelopmental genetic condition that affects multiple parts of the body. It occurs due to the spontaneous deletion of 26–28 genes on the long arm of chromosome 7, including the elastin (ELN) gene, which is critical for connective tissue and blood vessel elasticity. Most cases are not inherited, though individuals with WS have a 50% chance of passing it to their children if they do reproduce clevelandclinic.org+2.
Physical Features
People with Williams syndrome often have distinctive facial characteristics, including a broad forehead, short nose with a flattened bridge, upturned nose, full cheeks, wide mouth with a pronounced bottom lip, small jaw, and irregular or widely spaced teeth. Starburst-patterned eyes and epicanthal folds are also common clevelandclinic.org+2. Infants may have low birth weight and slow growth, and most adults are shorter than average clevelandclinic.org+1.
Cognitive and Behavioral Traits
WS is associated with mild to moderate intellectual disability, particularly affecting visual-spatial tasks such as drawing or navigating spaces, while verbal skills are relatively strong. Individuals often display a friendly, outgoing personality, high empathy, and a tendency to engage socially, sometimes described as a “cocktail party” personality. However, they may struggle with nuanced social cues, making peer relationships challenging Wikipedia+2.
Medical Concerns
Williams syndrome can involve cardiovascular problems, most commonly supravalvular aortic stenosis and other blood vessel abnormalities. Other health issues include high blood calcium (hypercalcemia), hypothyroidism in children, kidney problems, gastrointestinal issues, dental irregularities, and a higher risk of type 2 diabetes in adulthood clevelandclinic.org. Early detection and monitoring are essential to manage these conditions.
Development and Daily Life
Children with WS may experience delayed motor milestones due to low muscle tone and loose joints. They often require early interventions, including speech, occupational, and physical therapy, to support development. Adults may need supportive housing or employment assistance, though many contribute meaningfully to their communities in roles such as volunteers or paid employees williams-syndrome.org
Diagnosis and Management
Diagnosis is typically suspected based on physical and developmental features and confirmed through genetic testing to detect the deletion on chromosome 7. While there is no cure, management focuses on treating cardiovascular issues, monitoring calcium levels, supporting learning and social development, and providing therapies to maximize independence and quality of life clevelandclinic.org+2.
Prevalence
Williams syndrome is rare, affecting approximately 1 in 7,500 to 10,000 people worldwide, with an estimated 20,000–30,000 cases in the United States. It occurs equally in males and females and across all ethnicities WebMD.
Let’s make this fundraiser quick and snappy so that little Izzy can get back to being a precious, precocious little girl with parents who don’t have to worry about the cost of living as they fight for their little girl’s life.
-Daniel
—
If you want to follow Candy, Joe and Izzy’s Journey, you can visit their CaringBridge page.
Courtesy of Copilot