With all the diagnosis and tests ran, the doctors still couldn't give an answer as to why Reef was born with all of these issues. Until recently, Sean and TaLisa were told there was no explanation. That it was just a "fluke" thing. They weren't ok with this answer. They wanted more children but didn’t feel comfortable trying again until they knew whether there was a chance this could happen again. Reef has been through a lot! They didn't want their future children to have to endure all the pain from surgeries, countless doctor's appointments and hospital stays, as well as having to take medication 4x daily for the rest of their life. They kept searching for an answer genetically that may have been overlooked.
In November 2018, they asked their geneticist in New Orleans to run one last test, Exome Genetic Testing, just in case there was something Reef may have that wasn’t screened for on the previous 2 genetic tests. They got the unexpected results in March 2019, after three long months of anxiously waiting. Reef was diagnosed with Fanconi Anemia (FANCD1/BRCA2). It is an inherited DNA-repair disease that leads to bone marrow failure, leukemia, and solid tumors. Reef inherited this from Sean and TaLisa because they are both unknowingly BRCA2 carriers. There are 22 different subtypes of FA to date. Reef's type is extremely rare, very aggressive and has an early onset. Children with this type tend to have some form of cancer very young (usually before 5 years), and their life expectancy is very short. To complicate things, cancer is very hard to treat for FA patients because they can't handle chemo and radiation due to the fact that thier DNA doesn't repair itself. Cancer treatment literally causes more cancer. This was a devastating diagnosis to say the least!
Once Reef's genetic results came back they did scans, labs, and a bone marrow biopsy to make sure Reef hadn't already developed any cancers. Thankfully, all the tests came back good. Knowing cancer is a definite in Reef's future, they flew to Minneapolis on April 13th and met with Dr. MacMillan, who specializes in Reef's particular type of FA. Dr. MacMillan believes the best way to extend Reef's life is by doing a pre-emptive bone marrow transplant as soon as possible while he is healthy. If they wait until Reef is unhealthy, he only has a 30% chance to live. Even though leukemia isn't the only cancer to worry about, having healthy bone marrow could help Reef tolerate future cancer treatments that he couldn't tolerate with what he has now.
After lots of crying and praying, Sean and TaLisa have decided that the transplant will give their Reefy Brew the best shot at a future. They are going to proceed with a bone marrow transplant early this summer, and will have to stay in Minneapolis for approximately 120 days.
Sean has another year of his pediatric dental residency at LSU left and TaLisa is a full-time mom to Reef. Her time is consumed with multiple doctors appointments seeing specialists trying to give Reef the best life that he can have. The goal of this is to, first and foremost, get as many prayers going up for this family as we can. Reef has beat and defied the odds since he has come into this world and we know that God has a plan for this family and Reef. Secondly, to raise awareness to Fanconi Anemia (FANCD1/BRCA2). With it being such a rare type of genetic disorder, there is a lot of gray areas involving current and future treatments. Lastly, if you know this family, they are the most loyal people you will ever meet. The type of people you want in your corner and that go above and beyond for the ones they love. The type of people that would give you the shirts off their backs. As parents and as a family, they are facing an unforeseeable and daunting future. We feel that the financial burden is something that we can help with to eliminate one stressor. With Louisiana Medicaid not paying for out-of-state expenses, Sean & TaLisa are having to pay Cobra insurance out of pocket. Not to mention the travel and lodging while being in Minnesota during this crucial first step they’re taking. Their main focus is to do whatever they can to prolong and extend their sweet son’s life—as any parent would do—and should not be constrained to making decisions because of finances. If you feel led to help this family alleviate some financial burdens to where they can all be together as much as possible over these next 6-9 months, please donate below!
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