Tara's Medical Quest to Live
Donation protected
Hi! My name is Eileen but everyone calls me Mama Leen. I am fundraising for my daughter, Tara, who just turned 36 in October. She lead a perfectly normal, happy life while working as a full time, dedicated, caring CNA in nursing homes. In December, of 2016, she became ill and had to move back home. I watched her deteriorate for 3 months, going in and out of the hospital, as no doctor in our city, at that time, could figure out what was wrong with her. In March of 2017, I put her in the car and drove her to Rochester, NY where they admitted her immediately for 31 days. By this time, Tara had filled up with fluid. Her body leaked. There would be a puddle on the floor of my car from her legs draining with fluid. I had to wrap her body in towels. She was diagnosed with a rare disorder called hidradenitis suppurativa (HS) and she was in the most advanced stage. After many tests, they did a biopsy and found she had yet another rare blood disorder called Amyloidosis. She spent 2 years in out out of hospitals for 30 days at a time while we fought with insurance to allow her to go to the Amyloidosis Center in Boston Mass. We finally had to take it to court and it took 6 months for the judge to rule with us but in that time the amyloidosis had attacked her kidneys ( she almost died and had to be put on dialysis 3 times a week). It also attacked her thyroid and she now needs to be on medicine for life. Secondary Amyloidosis can attack any/all of the organs in your body. When she finally did get to Boston, she was admitted there for 30 days as they found she had a blood clot in the right atrium of her heart besides all other issues. The doctors had never seen such an advanced case of secondary amyloidosis (AA). Tara could not be put on a kidney transplant list at first because if she received a kidney, the amyloid would just attack it. It has taken years to get her amyloidosis under enough control and 7 surgeries on her hidradenitis, cutting out large patches of her skin. She also has to take chemo infusions every 8 weeks for the hidradenitis suppurativa, Yesterday, by the grace of God, a Christmas miracle, she underwent a kidney transplant and currently is still in the hospital trying to recover. Tara will still need more surgery when she heals from the transplant, to get the rest of the hidradenitis suppurativa (HS) out. She also needs a shoulder replacement from breaking her shoulder and elbow in August due to a seizure that we still do not know the cause of, but may have been due to COVID. She had contracted COVID and did not know she had it until the seizure which resulted in yet another 30 day, out of town, hospital stay.
Tara's life as she knew it was replaced with medical appointments, seeing specialist in Rochester, Syracuse, NYC and Boston, extended hospital stays, surgeries and constant pain for the past 5 years.
She is a strong minded lady with the determination to beat these diseases which are unknown to most people. The cost of medicines, travel, hotel stays, supplies, post operation expenses, continued care and living have depleted all savings.
Tara and our family deeply appreciates all of your prayers, blessings, and support. Any donation to help would mean the world to Tara.
Thank you for taking a moment to see how and why you can make a difference, and thank you so much for your support,
Organizer and beneficiary
Eileen Austin
Organizer
Utica, NY
Tara Austin
Beneficiary