Our ten-month-old son, Sebastian, Seb, or Sebby, gave those who knew him a magnetic command wherever he stepped into a room. Chubby, firm and totally charming.
He died when he was 311.
His death and the circumstances that led to him came as a complete shock to us and to all the wellness community that he knew in his short life.
He had an extremely rare and dangerous epilepsy, which he had not warned of, with so little research, that death was a possible outcome. We recently learned that only two babies in the world have had a diagnosis and epilepsy mutation over the past five years. They died early.
Sebby did not lead a sick life – her life was full and flourishing. When she was diagnosed for six months, she was controlled with medication. She only had four major seizures in her short life. Our worst fears took place when the fourth attack was fatal.
We're down to the ultimate heartbreak. They say that no parent should have to bear the loss of a child, and that they are now living with this pain, we agree more.
Sebby's brain died before the rest of his body. This was similar to the worst news that any parent should have heard, but revealed rare star formations aligned for organ donation.
When told, we sucked the shock in the best way possible and immediately asked if Sebby could share the organs. The next 24 hours were a flurry of highly talented professionals investigating what could be picked up from Sebby and investigating appropriate matches. We hoped there could be more from him, but his age and age imposed some limitations.
As we struggled with the enormous pain that our baby had died, we thought that because of the pain we had that day, we thought it would be proportional to the happiness of another family. Our sad tear rivers match the tears of joy from the recipient's family. The gift of Seb gave us hope that ours disappeared.
We're thinking of a person who is often on dialysis. Seb changed that person's life. This makes us very proud.
The night before Sebby died, we sent him a good one. Her friends and family surrounded her and said goodbye. He received hundreds of kisses and whispered too much love to his tiny ears.
Seb was tied to more tubes than any baby would ever have to suffer in his life, but we could sleep near him and keep his hand all night long, special memories we'll keep forever.
We operated on her on the day of organ donation. A series of doctors and nurses, the last of our beautiful son, and hell were cleared by goodbye.
We walked to a park near the hospital and sat in the afternoon sun. At that time we saw a helicopter reach the roof and asked us to think that our baby's life was flying towards the sunset and we hoped towards another family with hope.
We got our kid back for a couple of hours that night. Lifeless but never more angelic. A sleeping beauty with an impressive scar from the sternum to the waist – indicating where life had left him for another person.
RELATED: Why you should consider organ donation
We don't allow our exceptional staff at Rockstars Hospital to support this gift. Sebby had an extraordinary team around her last days, and stones were removed to fight her death. But once it was over, a brand new machine came into play to facilitate the final gift of organ donation.
This has slightly reduced our gift gap. We know she's healthy, somewhere else, so she offered her a second chance to live because of Seb.
His hand was empty, we moved away from the hospital holding hands, our hearts were heavy.
unbearable pain, but also with great pride. Our little man, a hero, is dead and we are very fortunate to be able to offer the gift of life and share his story.
Organ and tissue donation is the ultimate gift. We know that at Sebby's funeral, hundreds of people registered their donation decisions in donatelife.gov.au and we recommend you do the same.
On this Sunday DonateLife Thank You Day, we will honor our Sebby and bring a toast to the young person who helped Sebby to live a part. We are always connected to an unknown family that has been changed as much as ours, connected by a special little child.