Taylah Isabelle Keating born 1st November 1999, sadly passed away at the age of 20 on the 14th April 2020. She had suffered a long 2 year battle trying to get a diagnosis and treatment. Tay had chronic illnesses that were so rare that most doctors she saw either didn't believe her or simple didn't have the knowledge. We did a lot of research ourselves and came up with our own diagnosis and when we finally convinced a doctor to refer for tests, the results of scans and ultrasounds confirmed what we had discovered, that Tay had MALS (Median Arcuate Ligament Syndrome), MALS is a condition in which the median arcute ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver and other organs as well as the nerves in the area. This causes a patient to have extreme pain when eating and drinking. It causes extreme weightloss and a long list of other symptoms. The pain has been said to be compared to that of stage 4 pancreatic cancer. As we did our own research, diagnosis only took a few months to discover when most people wait years. It's widely known across the chronic illness community that there is very little knowledge among medical professionals in compression disorders. After a few months of asking around and seeing different specialists, a surgeon was found who not only knew about MALS but he had also performed a dozen surgeries successfully. When Tay consulted with him, it was discovered she not only had MALS but had another possible 2 or 3 compression syndromes. Unfortunately scans don't show the true nature of the compression and often the surgeon only discovers the severity once they are in theatre. Surgery for Taylah left her with a series of complications creating a domino effect resulting in 6 additional procedures and surgeries, each one of them life threatening. She smiled throughout this journey no matter how much pain she was in and never once gave up hope of not only surviving but going on to live a normal happy healthy life. Her final surgery was one where she was given only 20% chance of surviving and she told me, "If I don't survive, you must tell my story". She went on to say, "If I can help one person by telling my story, everything I have gone through will be worth it". It is likely that Taylah had other conditions yet to be diagnosed. At the time of her passing Covid-19 had a major impact on all of our lives and she was waiting for restrictions to be lifted so that she could investigate this further. Unfortunately she ran out of time. After being released from the hospital. She spent 6 weeks at home with her family before taking her last breath. There are so many layers to this story and it is my intention to tell her full story until my last breath no matter how hard it is to relive it. If she can go through all of that while maintaining a smile on her face, I can do this. Taysvision is just the beginning. Its my hope that telling this story will spark the interest of at least one medical professional who will then share it with others and maybe just maybe someone will do the research and shed some light on these conditions and potentially save lives.
For more information on these conditions see
https://rarediseases.info.nih.gov/diseases/11971/renal-nutcracker-syndrome
https://rarediseases.info.nih.gov/diseases/9597/postural-orthostatic-tachycardia-syndrome
https://rarediseases.org/rare-diseases/median-arcuate-ligament-syndrome/
https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/
https://my.clevelandclinic.org/health/diseases/14803-connective-tissue-diseases
https://rarediseases.org/rare-diseases/superior-mesenteric-artery-syndrome/
RESILIENCE STRENGTH COURAGE
These are the words that were consistently used throughout Tays journey. She always maintained a positive attiitude and kept that beautiful smile on her face no matter how much pain she was in. In fact she was at one stage considered to be the sickest one in the entire hospital and yet she only had concerns for all the patients surrounding her. Her resilience strength and courage will never be forgotten. She really was the ultimate warrior.
The Butterfly
In many cultures the butterfly is a symbol of the afterlife, as our soul transitions into a new space. It feels evermore poignant now that the last image Tay shared was of a blue butterfly.
After her passing the blue butterfly was posted by many as their new cover photo or profile pic and has become the focus of many cards and gifts we received so its fitting that this symbol becomes our logo of Taysvision. We hope that you wear your Taysvision gear with pride and post a pic and tag us @taylahsvision
Thank you
