Wynter needs a multivisceral transplant...

Hi, my name is Jessica and I am fundraising for my son Wynter. We started this Gofundme when Wynter received his diagnosis of Intestinal Failure/chronic pseudo obstruction of small intestine and we were presented with the potential cost of his life-long care.

He is now 3 years old and is awaiting a multi-visceral transplant. He has been listed since April 2024. He continues to have bi-weekly Dr. appts and blood work to ensure he continues to thrive outside of the hospital.

So… he's been on an interesting journey. A grand total of 28 procedures before his 3rd birthday! He's a fighter and continues to overcome every hurdle life throws at him!

If you didn't know, organ transplants are hard to come by... In Wynter's case, this procedure is rare and very expensive. A partial intestinal (small or large) transplant costs $1,147,300.00 on average. He'll need BOTH his Small Intestine & Large Intestine replaced. They tentatively have his Pancreas, Spleen, and Stomach listed as secondary organs (right now they’re hoping he'll keep those). It's too early to tell but unfortunately, it could also be his Liver (due to prolong TPN). He’s grown so much and now has the physical capacity to accept the organs. Woop Woop!

Medically he has had a rough road... 28 procedures before his 3rd birthday is nothing to sneeze at. March & June 2024 he had serious scares that required emergency surgical intervention. Both times requiring an additional resection/reduction of his intestines. Thankfully Wynter only had a few complications and bounced back.

He is still on TPN, 12 hrs daily. The 12hr break is to give his liver & kidneys a chance to recover. We’ve discontinued his j-tube trophic feeds, he consumes a small portion orally and enjoys snacking/tasting food.

Relevant information to understand Wynter’s condition:

(TPN =Total parenteral nutrition - a method of feeding that bypasses the gastrointestinal tract. A special formula given through a vein that feeds straight to his heart provides all of the nutrients his body needs.

Trophic Feeds - a small amount (2ml per hour) is slowly pumped into his small intestine to prevent atrophy and acclimate his organs for processing food in the future.)

Most organs are provided by a single donor, with the same blood type and they are performed within six hours of donation. In pediatric cases, the odds of survival after 5 years is 60%, 50% for the 10-year mark. God & Time are on our side.

Wynter requires an overage of ostomy supplies for a variety of reasons. His anatomy is complex due to the placement of his ostomy and does not allow for perfect seal of the ostomy appliance. This leads to frequent leakage requiring multiple ostomy appliance changes in a day. He is also very small and this also makes it difficult for the wafer to stay on. Furthermore, Wynter is a very active young child and sweats as he runs around, which affects the ability of the wafer and pouch to stay on. Being a young child which Wynter is, like any typical 3 year old, physically capable of pulling off his ostomy supplies but lacking the frontal cortex cognitive development to be able to control his impulses and understand the consequences of his actions. Although we utilize behavioral management strategies and protective wraps over the ostomy to decrease his access to the ostomy, these strategies are not fool-proof and he continues to need 3x more supplies than allotted currently through insurance reimbursement.

If the ostomy appliance is not immediately cleaned and changed, Wynter is at risk for severe skin breakdown around the stomas, potential infections and hospitalizations. When the supplies are pulled or fall off they need to be replaced by new supplies, otherwise his stoma will leak feces, creating a health and safety hazard for those around him, as well as the aforementioned risks to his skin. In fact, in the recent past Wynter had an ER visit where he required multiple skin treatments and urgent dermatology consultation for a severe body rash that developed when his ostomy bag leaked in the middle of the night, soaking him in fecal material. He was fortunate that the rash was the only consequence of this incident. Given the presence of his central line, he continues to be at high risk that fecal ostomy contents will spill onto his central line and lead to a central line associated bloodstream infection. Any of these complications increase Wynter's need to utilize higher levels of emergency room visits, inpatient hospitalizations, and increased medical interventions (I.e., blood draw, antimicrobials and other medications, procedures, biopsies).

At 3 years old, due to his prolonged hospitalization (11 months) when evaluated in June 2024 - he is approximately 25%-33% delayed. Although he struggles with his speech, his articulation is the true problem. His Motor Skills are excellent as well as his memory.

Although Wynter is getting better at handling all the medical ups and downs, he is still dealing with PTSD. The trauma comes from his multiple hospitalization, so doctor appointments are traumatic experiences. This also plays a role in his inability to detach from his mother.

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This fundraiser is to help cover any incidentals, non-covered medical equipment, and the extra cost to live in NYC while on this journey of recovery. Wynter is going to beat the odds and live to be an old man who accomplishes great things with his life.

Thank you for helping.