Daniel was a wonderful little boy whom we tragically and unexpectedly lost on October the 6th, 2018.
In September 2018, Daniel was so excited to start school. He couldn’t wait to be at the same school as his big sister with friends he already met at preschool and the school’s playground. Unfortunately, he only managed to be at school for one week before he got seriously ill.
On the 23rd September Daniel was taken to A@E with what we thought was a bad case of tonsillitis (a regular occurrence) which wasn't clearing and he needed to be given a stronger antibiotic.
Sadly, that wasn’t the case. He was admitted to the children’s ward, bloods taken and diagnosed with a liver problem. He needed to be transferred to King's College Hospital in London.
Daniel spent one week at a specialist children’s liver ward, where the doctors tried all they could to help his liver recover. Towards the end of that week it seemed that things were improving. He was a lot better in himself, playing in the ward’s play room and doing puzzles, his favourite thing at the time. Then on Sunday, things took a dramatic turn. He developed myclonic seizures that couldn’t be controlled by normal epilepsy medication therefore he had to be transferred into intensive care unit. That’s where they gave us the devastating diagnosis. Daniel had a rare mitochondrial condition called Alpers Disease. The only hope for him would have been a liver transplant, however, the genetic confirmation of the diagnosis meant he couldn’t have one.
Alpers Disease is a rare progressive neurological condition that effects mostly the brain and the liver. Currently, there is no known cure for this condition.
We only had days to come to terms with not only that Daniel has a degenerative condition, but also that soon he was going to die.
Each day brought more and more bad news and although the hospital staff did all they could for us and for Daniel, we knew there was only one possible outcome.
Daniel fell into a coma in the intensive care unit and there was very minimal possibility for him to ever wake up from it. Even if he did wake up, he would eventually die of multiple organ failure.
Now we had to make a decision where he was going to die! We were adamant that he was to leave the hospital still alive. That seemed very important to us at the time. We wanted to take him home but that wasn’t an option from a practical point of view. The next best thing was a hospice.
We were well aware, the morning of the transfer to the chidlren's hosipce in Guildford, that we were going there for Daniel to die but that was better than the hustle and bustle of a busy hospital. And as horrible as it may sound, that was the tough decisions we had to make then.
At Shooting Star Chase children's hospice, the room we were given was all nicely decorated. The bed covers had dinosaurs on them, just as he would have at home. He had his pillow and his blanket with him. He had Piglet and his dinosaur with him. And most importantly he had his family with him. His sister coming in and out of the room, telling him about all the different activity rooms at the hospice and the playground we had a view of from the room. The place had a wonderfully tranquil feel about it. If it wasn’t for the circumstances you’d think you were on holiday.
Daniel passed away the afternoon of the 6th October 2018, the day we arrived at Shooting Star Chase. He died in peace and tranquillity surrounded by his family.
And although the grief and the pain of losing him is still very much burning inside us, the fact that the hospice staff were there for us in that tragic time meant the world to us. They literally walked us through it step by step. They are there for the good and the bad and they are all amazing bunch of people. Their dedication and the care they provide to families is invaluable. The nurses and the entire care team at Chase have been a rock for us from the moment we entered the hospice to the moment we sadly had to leave. They continue to be there for us whenever we need them. We are very grateful for their support.
Daniel had a big heart and a lot of love and kindness for everyone he met. His wonderful smile and happy personality would always brighten up your day. He made a huge impact on those who knew him, adults and kids alike. He was a very special little boy, who was taken from us much too soon. Daniel was brave, compassionate, caring, loving and kind. He was a fighter until the very end.
We will always remember you, little angel, and we will keep you in our hearts forever no matter what. We will miss your loving hugs and your gorgeous smile.
Mama, Daddy and your big sister xxx
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