Our Story

Adelynn (Addy) is a precious 4-year-old little girl who is kind, humble, smart, empathetic, outgoing, and a puppy lover!  Addy was born perfectly healthy with no complications during pregnancy or delivery. She was living a happy life and embracing her new role as a big sister; November of 2022 changed our lives drastically! Adelynn became very ill and went into multiple organ failure, her cerebellum swelled and she stopped walking and talking . We slowly had to re-teach previously acquired knowledge, which we continue till this day with therapy and medical practices, in hope that she will regain everything she lost . With tons of testing, labs, and different specialists trying to get information on her diagnosis, we are slowly starting to get answers. They diagnosed Addy with autoimmune hepatitis, type 1 diabetes, kidney disease and a rare genetic disease called Wolcott Rallison Syndrome. She was released from the hospital in the beginning of 2023, and we were sent to an inpatient rehab center in OKC to help monitor her health as well as to provide her with OT, PT, speech therapy, etc.

Once we were released from the rehabilitation center, we flew to CA to get a second opinion in hope that they were wrong about this terrible disease they diagnosed our Addy with. We were still in denial and disbelief. As we began the referrals, we had high hopes that maybe they misdiagnosed her, but unfortunately, later that year we were proved wrong again and she did in fact have WRS. Then came January of 2024 — Addy became ill again with a slight runny nose, and within a couple hours, she went into organ failure once again. After that traumatic episode, we were sent to Stanford and told a liver and pancreas transplant could possibly be the fix to all of these organ failure episodes.

So here we are in the middle of the year, keeping her away from social interactions to prevent her catching any bug/virus, and now desperately waiting for a liver transplant with hope that this could possibly be the fix our baby girl needs to have an opportunity of living a normal life again! Addy loves her friends, family, and loves “School” (what she calls therapy). I’m hoping we get to one day let her go to school and become a child again to be able to do everything she wants to as a typical developing child her age. We need our little miracle to love and be loved, to grow with her siblings, to live! We also need to be able to live life again. Will continue to push forward for our little girl and hope that we will get all the assistance, guidance, and excellent medical care/treatment for Addy!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

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