Dear Organ Donor Families:
In honor of National Donate Life Month, I would like to dedicate this blog post to you and your families.
On behalf of our family and other recipient families like ours, I wanted to just say thank you to you and your very special family. We know that having to make the decision to donate was not an easy one and we are deeply sorry for the loss of your loved one. We know that our words of gratitude will never be able to convey to you the impact your donation has made in our son’s life and other recipient families like ours. However, we still wanted to let you know how much of an impact your decision to donate has made upon our lives.
As a recipient family, we also realize that there probably will never be an ideal time for you to receive a letter from us and we do understand that it may be painful for some of you to even respond. But please know that as a result of your act, you have now become a part of our family.
Our precious little boy who received not one, but two liver transplants by the time he was 2.5 years of age really hit home to us the importance of organ donation. Up until our son received a liver transplant, life for him was very unpredictable as he was diagnosed within a few days of being born with having a rare metabolic disorder called Ornithine Transcarbamylase (OTC) Deficiency. Simply put, his liver was missing a very important enzyme which is needed to help his body process ammonia which is the by-product of protein. If this ammonia is not removed from the body, it will build up in the body and can cause coma or death.
For two years, we tried to manage the metabolic disorder with medicines and a strict protein diet (plant-based only) during which his ammonia level would spike at any given moment due to a cold/virus, fever or teething issues. By the time he had his first liver transplant he had about ten hospital stays due to the ammonia spikes, not counting the Emergency Room visits and the frequent clinic visits. As the hospital stays started to become more frequent, it became obvious to us that we had to take the next step and to place him on the transplant list. Our son underwent his first liver transplant in June of 2013 (he was about 27 months old), but due to complications, he had to undergo another transplant almost 4 months after the first.
It has been about a year and half since the second transplant and our son is now four-years-old and doing well. He continues to be followed up by his very dedicated transplant team for blood work and clinic visits. However, we no longer have to live minute-to-minute or hour-to-hour, worrying he will end up back at the hospital. In addition, he was able to attend school for the first time in fall of 2014.
Our family is truly grateful for this second chance with our son, which was made possible by you, our special donor family. A day does not go by that we don’t give thanks for such a gift. You have truly given us a gift like no other which we will cherish forever.
#EveryDayIsAGift #DonateLife #LiveOnNY #ThankYou