BORN WITHOUT KIDNEYS- Isaac's Transplant Fund
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Hi, my name is Diana and I am fundraising for my nephew Isaac Shakespear. Isaac was born and is living without kidneys. He beat a universally fatal condition and has now reached the requirements to receive a lifesaving kidney transplant. All funds raised for Isaac will be used to support Isaac and the costs associated with his transplant and the care needed throughout his medical procedures and beyond.
His parents have shared a little of his story below:
In July 2021, our baby boy was diagnosed with Bilateral Renal Agenesis (BRA) at 19 weeks gestation. Formerly known as Potters Syndrome, BRA is the complete absence of kidneys and bladder. This condition is considered universally fatal, with babies dying within minutes or hours of birth from underdeveloped lungs. When we received the news, we left St George, UT to Los Angeles, CA. In LA we pursued a trial for multiple amnioinfusions to replace the natural amniotic fluid to give our Isaac a chance to live. During those weekly aminoinfusions, the amniotic sac developed a leak and we had to stop infusion early.
Isaac was too small to get the necessary surgeries in LA so we moved north to Palo Alto, where the doctors at Stanford took over Isaacs care. Isaac was born at 33 weeks, and 4.5 lbs. He battled many challenges over 6 months and was able to overcome every single one. He was finally stable enough to leave the NICU after 6 months and was transferred back to Utah in late April 2022. He spent a few weeks at Primary Children’s Hospital in Salt Lake City before being discharged on May 5, 2022. After 10 long months we were able to move back home to St George.
Isaac has been receiving 11-12 hours of peritoneal dialysis every night at home since his discharge. As his parents, we hook him up and unhook him each day. Isaac is also fed through a feeding tube, he does not eat because his dialysis makes him nauseous. Isaac has therapy and medical appointments nearly every day and travels to Primary Childrens Hospital every month for a dialysis clinic. He is now 15 months old and has reached the size for a kidney transplant.
The journey to this point has been long and difficult, but we are far from the finish line. Isaac is scheduled to be worked up for transplant at both Primary Children’s and Stanford. We are working to find the right match and the right care to make sure he has a successful transplant and gets a shot at a full life. We have medical insurance but it will not cover all of the many transplant related expenses as well as the indefinite follow up care Isaac will need for the rest of his life.
We are asking for any help with his transplant and follow-up care. We embarked on this journey knowing that if Isaac didn’t survive, the experience of treating him would benefit other babies. Now he continues to pioneer the path for other babies world wide to beat BRA and other kidney issues. The physician team treating Isaac are believers in this treatment and are already looking at new equipment and techniques to help others like Isaac. We want to make sure he gets the best care for himself and all the babies that will follow. If you can help at all with the financial cost of this treatment, it would be appreciated.
Respectfully,
Kasey & Kristen Shakespear
More ways to donate and to learn more about Isaac:
Organizer and beneficiary
Diana Cox
Organizer
Saint George, UT
Kristen Shakespear
Beneficiary
