Our ten-month-old son, Sebastian, Seb or Sebby to those who knew him, gained a magnetic command of a room wherever he ventured. He was chubby, sturdy, and utterly adorable.
He died when he was 311 days old.
His death and the circumstances that led to it came as a complete shock to us, and to the entire medical community he was known in his short life.
He had an extremely rare and dangerous epilepsy, which with so little research did not offer early warning that death was a possible outcome. Since then, we have learned that only two other babies in the world have had their epilepsy mutation and form diagnosed in the last five years. They also died early.
Sebby did not lead a life of illness – his life was full and he was thriving. When he was diagnosed at six months, he was controlled with medication. He suffered only four significant seizures in his short life. Our worst fears came when his fourth apprehension, the last one, proved fatal.
We suffer the final displeasure. They say no parent should have to bear the loss of a child and now living with this pain, we can not agree more.
Sebby's brain died before the rest of his body. Although this sounds like the worst news to any parent, it has triggered the rare occurrence of stars lining up for organ donation.
When we were told, we absorbed the shock as best we could and immediately asked if Sebby was able to share his organs. The next 24 hours were a flood of extremely skilled professionals investigating what could be removed from Sebby and finding suitable matches. We hoped that more could be taken from him, but his condition and age added some limitations.
As we struggled against the immense pain of being informed that our baby had died, we were comforted to know that the pain we felt that day would have been commensurate with the happiness of another family. Our rivers of sad tears, combined with tears of joy from the recipient's family. Seb's gift gave hope where ours had been lost.
We often think of that phone call, for a person who was living their life on dialysis. Seb has changed that person's life. That brings us a lot of pride.
The night before Sebby's death, we gave him a nice farewell. His friends and family surrounded him and said good-bye. He got hundreds of kisses and so much love whispered in his little ears.
The Seb was tied to more tubes than any baby should suffer in a lifetime, but we were able to sleep next to him and hold his hand at night, special memories we will have forever.
On the day of your organ donation, we took you to surgery. The row of doctors and nurses was scrubbed and solemn as we said the last and hellish goodbye to our beautiful boy.
We walked to a park near the hospital and sat in the afternoon sun. We saw a helicopter arrive on the roof at that time and we like to think we saw our baby's life fly into the sunset, bringing hope to another family.
For a few hours that night, we took our boy back. Without life, but never more angelic. A sleeping beauty, with an impressive scar running from the sternum to the waist-indicating where life had left him to be given to another.
RELATED: Why You Should Consider Organ Donation
We are grateful to have no end in our Rockstars, the exceptional staff of the hospital that has aided this gift of life. Sebby had a phenomenal team around him in his last days, no stone was left on stone to fight his death. But once its end was imminent, a whole new machine kicked in to facilitate the last gift of organ donation.
This gift has reduced our emptiness to some extent. We know that somewhere, someone else is healthy again, offered a second chance to live because of Seb.
We left the hospital empty-handed but holding hands, our hearts heavy with a
unbearable pain, but also with such great pride. Our little man died as a hero and we felt so lucky that he was able to offer the gift of life, and we can share his story.
The donation of organs and tissues is the last gift. We know that hundreds of people at Sebby's funeral have made their donation decisions at donatelife.gov.au and we ask that you do the same.
At DonateLife Thank You Day this Sunday, we will honor our Sebby and give a toast to the young man who helped a part of Sebby live. We will always feel connected with an unknown family that has been changed as much as ours by a special boy.