Nicholas was transferred to North Staffordshire Paediatric Intensive Care Unit, the nearest available specialist ICU bed. For two weeks Nicholas was on a ventilator. The seizures were relentless and intractable, his condition was critical. The doctors induced a barbiturate coma to allow his brain to rest. It felt as though we had slipped into the twilight zone, unreal.

As the days passed it was recognised painfully that there would be long-term problems. Nicholas was transferred to Pendlebury (Royal Manchester Children’s Hospital). The neurological department there is excellent; Nicholas needed the expertise which they could provide. Several times in Pendlebury Nicholas was close to death. He remained on a ventilator for weeks. Could he breathe on his own? Would he ever breathe on his own again? The little boy who had talked, walked, run around dancing and singing and teasing the dogs. The same little boy who was going to be a pop idol, engine driver, an artist or comedian, prime minister at the very least. We held our breath willing him to breathe for himself.

Before he could do so much, now it was like climbing Everest for him simply to draw breath. Then one day he could breathe, and we were overjoyed. Nick played `musical beds` backwards and forwards between the high dependency unit and intensive care, an emotional roller-coaster going nowhere for a while.

Christmas was spent at Pendlebury. On Christmas Eve (his Grandads` birthday), we had a 'window', a glimpse of the Nicholas we once knew. He looked around, and rolled about on the floor trying to get up, and three times he deliberately reached up and stroked his Mother`s hair, a loving gesture of affection, the way he always had. What a special gift!

In January while still in high dependency Nicholas spoke. He shouted "hey" (well he is from Lancashire what else do you expect?) The nurses and his mother heard him speak. We cried tears of joy – we thought he would get better!

According to the doctors at Pendlebury Nicholas was more extensively investigated than any other child ever. Specialist opinion was sought from experts around the country. He endured no less than three painful lumbar punctures and a muscle biopsy. For months every single test was normal and negative. Meanwhile Nicholas lay there frustratingly desperately ill, the doctors equally desperate to help him. They tried everything possible, everything they could think of, even experimental ideas. Steroids, antibiotics, human acquired immunoglobin treatment. NOTHING WORKED. As the illness progressed and Nicholas visibly lost skills and deteriorated, the hope for diagnosis of viral encephalitis was slipping away, and with it our hopes for Nicholas`s recovery. His poor body failed to recognise that there was anything wrong with it and he made no attempt to repair or get better. The problem was genetic. Finally after all those months of tests and waiting, the words we dreaded, the words no parents should ever hear. All evidence SUGGESTED that Nicholas has ALPERS DISEASE. An autosomal recessive disorder, a bio-chemical fault which causes the cells of the brain to die; the power is simply switched off. Both parents must be carriers. We were told Nicholas may have only weeks, months or years to live. Confirmation of diagnosis is by post-mortem.

On the 20th of February 2006 Nicholas was transferred to Queens Park Hospital in Blackburn, close to home. Through the tears we thought our baby is coming home at last. The consultant and staff there have been fantastic and are regarded with great admiration, respect and affection. The community care team and services were involved and mobilised, ready for the big day when Nicholas was discharged from hospital. There was nothing more the hospital could do for him, they had tried everything. Nicholas needed to be surrounded by the love of his family, to have the stimulation and support that was not to be found in a hospital environment but in a loving, caring community setting.

Nicholas finally came home in March 2006, a very different child to the one first admitted to Lancaster hospital six agonising months previously. Nick compared to a newborn baby, unable to support his head or sit up on his own. Unable to move in a controlled way he displayed strange fidgety movements. Nicholas could not eat for he had no control over his mouth, and was fed via a naso-gastric tube, and then via a gastrostomy (mic-key button) directly into his tummy, which was much safer. Nicholas communicated by expression which we had to interpret, but was unable to smile. Nick felt pain, and was able to cry, when he did we cried too. When contented and comfortable there was a peaceful expression on his face. Nicholas continued to have seizures which were problematic and cyclical.

The child we had was almost pitiful, achingly vulnerable and helpless. We are grateful for all the precious and wonderful memories of a very special and brilliant little boy. We still think he is perfect and beautiful and gorgeous, and we love him more than anything in the world, forever. We prayed for healing, and peace for Nicholas.