Just before Christmas 2002, however, Sam was admitted to hospital with a chest infection. He came home on Christmas Eve, thank goodness, but his physical health was beginning to deteriorate. He needed chest physio three times a day, and was put on full time oxygen. Sam’s strength was declining and he needed assistance now to sit up.

We set up a routine for Sam at home, and somehow managed to spend time with Charlie, who was crawling by this stage, and Lucy who had just started school.

During the next 6 months Sam developed numerous chest infections, and also started having seizures. He had numerous hospitalizations during this time - it was a very stressful time for the family.

During one hospitalization Michelle and I were called to a meeting with Sarah Fleming, Director of the Palliative Care Service, and Dr Phil Egan, Sam’s Pediatrician. We were advised in this meeting that it was highly likely that Sam would not survive that winter, his chest was that bad. It was suggested Sam had only 3 months to live.

A meeting was arranged by Sarah the next day, to advise our families of this news. It was a very sad time for all, as you could imagine.

It was particularly difficult advising Lucy that her brother was going to die soon.

Incredibly, Lucy coped with this news. Perhaps it was because she had, like us, seen Sam’s health continually to deteriorate.

On June 30, 2003, Sam turned three and we celebrated his birthday his birthday at home with all his loving family.

The following day, July 1 2003, Sam came down with another chest infection, the worst one yet. He was admitted into hospital again.

Sam bravely fought the chest infection with intense chest physiotherapy, and intravenous antibiotics. However, every time we went to take Sam home, he would develop another infection.

His room in the hospital became like an Aladdin’s cave of get well cards, photos, posters, Lucy’s pictures, stuffed toys and decorations! Not to mention the constant stream of well wishers!

There became an incredible feel of peace and love in his room, in stark contrast to the chaos of the hospital ward and the outside world.

Winter came and went, and then so did Christmas! The family all enjoyed a joyous day with Sam on the hospital playdeck.

Sam’s chest infection cleared, however, but the neurological degenerative nature of his disease meant he lost most of his physical functions, including his ability to smile.

His beautiful eyes, with those long, curly eyelashes became the windows to his soul.

Over Summer, Sam’s health stabilized and we were able to take him out for many outings from the hospital including to the zoo, and the botanic gardens. However, because Sam required 24 hour nursing care, and his health was very vulnerable, he remained in hospital.

Sam and the family met many special visitors whilst in hospital. He was featured in a beautiful news story by Jane Reilly on the Channel 10 News, and was visited by numerous celebrities!

On Christmas Day 2004, we decided to bring Sam home for a day visit, his first visit home since July 2003. His health had been stable for months, and we felt the time was right to bring him home.

We would lay Sam on the back seat of our station wagon, have the suction unit ready to clear any of his secretions, and drive cautiously home!

Sam’s Christmas homecoming was a truly beautiful experience, and Sam coped well. We then brought him home for a day visit each fortnight from that moment.

On April 18th 2005 Sam came down with a chest infection, Michelle and I realised “his time” was near. That day his legion of family and friends came to say goodbye.

Michelle and I spent the night with him in his beautiful room, and he passed away  peacefully in our arms at 5am on April 19, 2005.