Support Sammy & AJ Palace: Medical Bills for Veda
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Summary:
For anyone that has spent time with Sammy and AJ Palace, you know that they are two of the most generous and kind-hearted people you will ever meet. They are now in need of our help and we want to show up for them in a HUGE way. Karen and I have started this GoFundMe on their behalf after months of watching the burden of medical debt create immeasurable stress. Following the birth of their daughter, Veda, and the care associated with her severe PKU diagnosis, they have over $85,000 in medical bills, including multiple PICU (Pediatric Intensive Care Unit) visits. They were unable to work full-time for well over 6 months to prioritize her care and were also not able to afford childcare for both children on top of medical bills in order to work and generate the income they had previously. It has been a vicious cycle.
Providing any financial support to this incredible family would help tremendously in relieving their medical debt, and assist everyday expenses that have become a struggle such as groceries and gas, so they can focus on continuing to be rockstar parents to both of their children and regain some stability. We have increased our original goal of $100,000 to $150,000 to provide a cushion for basic expenses, Veda's lifelong medical costs and future IVF - the safest way for her to carry a child if she decides to become a parent one day!
Facing the fear of a lifelong diagnosis for your child is too much to bear. No family should have to face it. And no one should be catapulted into insurmountable debt overnight just trying to keep their child healthy and alive. This could be any one of us.
Veda’s Story:
Nine months ago Sammy and AJ welcomed their second child via emergency c-section, a beautiful baby girl - Veda Faye. After 5 days earthside, they received a diagnosis from her doctor of a rare genetic disorder - PKU (Phenylketonuria). Things moved quickly as they were scheduled at the Children’s Hospital to meet Veda’s team of doctors for more tests and instructions on how to complete what is called a washout at home. AJ had to stop breastfeeding immediately which was devastating and give Veda a special PKU formula for 72 hours to test her levels - and determine how severe her case was.
It was an extremely traumatic 24 hours to follow - Veda became completely lethargic + hadn't had a wet diaper and was hysterical, she would not drink the PKU formula. Sammy and AJ went back to the Children’s Hospital and she was urgently placed on a feeding tube in the PICU for days.
After 72 hours, they were able to retest her levels and determined that she has a very severe case which in the PKU world they call classic. (There are two categories - mild and classic). In the hospital the doctors kept talking about irreversible brain damage and how the first 30 days are the most important, asking critical questions such as “Is she staring a lot?” Sammy and AJ were beside themselves with stress wondering if a certain amount of damage had already been done. They are eternally grateful that the diagnosis was early enough to prevent damage to Veda’s nervous system.
Throughout this time, AJ is also seven days post C-section, sleeping upright, in a waiting room chair that they pulled into the PICU. This caused incision complications that AJ has still not had checked out - since they had already been pummeled with medical bills, she could not pay the $600 balance on file, and due to the office being a private practice - they would not see her for a postpartum visit.
What They Learned:
- Results soon came in during the PICU stay and revealed that Veda’s case was very severe. They began to understand what life would look like - learning she would have to be on a special medical formula ($$) and eat a very restricted metabolic diet of no meat, eggs, dairy, legumes etc. (rarely covered by insurance) for the rest of her life. This level of care with her diet is critical - if she were not to follow it, she would show signs of permanent brain damage, tremors and seizures.
- Veda will never be able to eat over 90% of food and is currently allowed ONE single gram of protein from food a day. What most people don’t realize is how many foods contain protein (i.e. broccoli, pasta, kale - the list goes on!) This number will increase slightly with age - a predicted goal of 5 grams a day.
- Sammy and AJ do weekly blood tests at home, which she will continue for the rest of her life, to ensure her Phenylalanine levels are within a healthy range.
- According to a UofM study, 23% of parents quit working due to their child’s PKU, and more than 85% of parents found it difficult to follow the recommended diet due to the cost of the diet.
What Happened Next?
- In her 9 months of life, Veda has had multiple hospital stays and required specialist care. The Palace Family went from having zero debt, to over $85,000.
- Not to mention how it has impacted their company and livelihood as creatives - the inability to continue videography for a significant period of time to prioritize her care, meant that their primary source of income came to an unexpected halt as the bills piled up.
- The money we raise will go directly to medical bills, childcare, groceries, metabolic foods and gas.
Thank you everyone for your support and taking the time to read Veda's story + support the Palace family!
Lindsey Smith and Karen Puder
Fundraising team (3)
Lindsey Smith
Organizer
Nashville, TN
Ashley Palace
Beneficiary
Kayla Cummings
Team member
Karen Puder
Team member