Our darling Ali made a big impact on our lives from day 1. He entered the world on the 22^nd October 2003 weighing in at an impressive 10lb 4oz. He decided then that there was only one way to keep this sort of growth up – this was to abandon milk and attack all things sweet.

As he grew Ali was at his happiest in the presence of a biscuit or donut! Ali loved donuts – something that became part of our Friday routine. In fact he became more generic and would often be heard asking for something round to eat. After being offered a wide range of healthy round food – all of which were refused, it would be apparent he was waiting for one of his favourites!

This love also led to a quandary in his life. Friday was also power ranger day – where Ali and his brother Thomas could eat their tea in front of the TV watching Power Rangers. He remarked to his Nursery teacher once that he could not decide what he should call Fridays – Power Ranger Day or Donut Day. Oh the decisions.

When Ali was about six months old, we noticed some unusual spots on his skin and in one of his eyes. He was then diagnosed with a rare skin condition – Juvenile Xanthogranulomas. He was fortunate to be treated at Great Ormond Street Hospital – where he was seen by the country’s leading dermatologists. This was when Ali’s extraordinary tolerance first came to the fore. It was truly humbling watching our son undergo tests, examination and treatment without complaint. He appeared to have an inherent trust of those treating him. His complicity didn’t go unnoticed.

By the age of 2, he seemed to be over the worst and was turning into a special young boy. He seemed to have a deep understanding of so many things that should have been beyond him and had an incredible ability to engage adults and other children alike.

Through nursery he developed a love of books and puzzles which would continue through the rest of his life.

He was socially very aware. He was very conscious of his own behaviour and of those around him. This was something he could use to his own gain. He would regularly plan trips for Thomas to raid the biscuit cupboard – while he sat innocently at the table. He would have made a great leader someday!!

Ali had developed a ‘funny-walk’ which he would do to cheer himself up when he was feeling sad. However one morning even that failed. He was sitting on our bed and was very grumpy. We suggested everything we could think of to get him to cheer up – including deploying the ‘funny walk’. But no - Ali sat there at 7.30a.m. and declared – “There is only one thing that will work – what I need is a glass of sherry!!”.

Ali had a great love for his family and was in his element when surrounded by us. He loved to play with his brother, sister and cousin and was able to change his style of play to suit who he was playing with. He loved the dinner table and even when he was very ill towards the end of his life he would ask to be carried to the table to join others eating. This showed us his incredible strength of character – an attribute that made us so very, very proud of him.

He loved a gathering where he could captivate those around him.  He would discuss many subjects – but as many of us here know he loved nothing more than discussing top 5’s. Regular discussions would be about your ‘Top 5 Biscuits’, your ‘top 5 sweets’ or your ‘top 5 superheroes’. But just providing a list was not good enough. To keep Ali happy you would have to explain the rationale behind the ordering. Ali was a boy of precision.

He demonstrated this to me at about 3 a.m. one morning in November. Ali woke me up and decided it was time for a chat – a regular occurance! But during this conversation he movingly decided to tell me why he loved everyone. He said:

            I love Grandpa because he always smiles. Helen the nurse and Grandpa are the smiliest people I know.

            I love Gran because she loves kisses and cuddles.

            I love Daddy and Uncle James because they chill out with me.

            I love Claire because she is smiley and loved hugs

            I love Thomas and Hannah because they look after me.

            I love you because you and me like books and you like kisses and cuddles.

            I love Tilpot [his cousin] because she is sweet and she reminds me of George from Peppa Pig.

September 2008 saw Ali start school – he was so excited and loved the challenge that school presented. It was a chance to show how clever and able he was. It also gave him the chance to spread his charm around the teaching staff – with whom he formed a close emotional bond. Particularly Mrs Wood his class teacher. He also adored the fact that he could now go to school with Thomas. He could now get dressed in his uniform and proudly join his brother in the walk to school. The two of them would often play with each other at break time and Thomas being the great big brother he is would often go and check on little Al.

Although never rushing to school he would pull you up on slow progress. He once said to me in the playground after school – “Mum let’s do a deal because I am getting angry. No more talking to no more mummies”. Comments like these made us laugh so much.

Sadly, just prior to the start of the Spring Term Ali was diagnosed with Leukaemia.

Within days he was moved to the Royal Marsden where tests were done to diagnose the exact nature of his illness. It was an agonising couple of weeks while we waited to see what type of leukaemia he had. Eventually he was diagnosed with JMML and it was apparent that he would be in need of a bone marrow transplant.

Ali spent the first 5 months receiving treatment at the Marsden in preparation for the transplant. This involved 3 rounds of chemotherapy. As with everybody else that Ali met, Ali left a permanent impression on the staff at the Marsden. His complicity, sweetness, precision and positive approach to life endeared himself to many of the doctors and nurses.

As parents we were again humbled by Ali’s resilience, his bravery and his ability to fight. As his Grandpa said at the beginning of his treatment, be B for Brave and show F for Fight. He certainly listened . He was a most courageous, brave boy.

The nurses fell in love with him because he never complained about what they had to do to him and had an implicit trust in the treatment they gave him. Despite being his nurses Ali was able to form a close loving bond with them – and had his team of ‘Ali’s Angels’ that looked after him. Mind you as per most things these days – he created league tables and made no secret of who was his number 1, 2 and 3! He wasn’t shy in giving feedback and promotions could be gained!

Ali kept himself comfortable. He maintained a snack cupboard that put the hospital shop to shame. A treasure trove of all things chocolaty and biscuit. He even padlocked it to prevent Uncle James from stealing his Monster Munches during his overnight stints. 

Ali perfected the art of “bedding in” – where he would watch DVDs – but only after carefully getting his snacks and drinks sorted and available to hand. Ali loved films and he loved bedding in.

His love of puzzles grew. He was promoted to ‘Super Puzzler’ after delivering on his Uncle James challenge of completing five one-hundred piece puzzles.

Ali’s approach to life was summed up with a line from his favourite film – Kung Fu Panda. “Yesterday was History, Tomorrow is a mystery, Today is a gift – which is why they call it the present”. And he made sure that he enjoyed every day as much as he could.

His treatment had been geared up to getting him ready for his transplant. When the search for donors was carried out – there was only one living perfect match available globally. His little sister. She was only 22 months old when she provided the marrow that could have saved his life.

Ali’s transplant went well and he came out of hospital in June. He had a couple of very enjoyable months at home. Ali had more energy following his transplant than he ever had previously. This was so noticeable in the way he began playing with Tom. Just beautiful to witness.

But sadly, a routine bone marrow test in August would indicate that Ali had relapsed and would require more treatment and another transplant. The next round of chemotherapy didn’t work and showed that Ali’s condition was beyond treatment. His JMML was too aggressive. After being told the devastating news – we brought him home. Where he stayed with us until he died.

Initially when he came home he was physically well enough to do activities, and we went on some special family outings. Memories of these and other special times at home will remain with us forever.

He even went to school again for a few days. He had really missed his friends and couldn’t wait to see them. It’s impossible to explain the emotions that went through our minds as we watched him walk up the path to Eastwick Infant School. It was heartbreaking knowing he would only manage a few days.

Ali loved his friends and his teachers. He had great school friends and neighbours and really loved the sessions in hospital when he could Skype his class from his hospital bed. But throughout this his love for Luke stood out. Luke meant so much to him and he will always hold a special place in Ali’s heart – and the friendship bracelet that Luke gave him he never took off.

Ali soon became housebound. But during his decline he remained very content and still never complained about anything.

His love of DVDs grew even more and loved to chill out with his family. His love of books intensified and he thoroughly enjoyed discussing them as we read. He invented the ‘Reading Record’. This involved us reading an extra book every night at bed time. After a while we peaked at 26 books and 2 ½ hours to get him to sleep!

He once described Paddington as a genius. And I think we can all see Ali in a little bear that keeps a snack under his hat and refuses to go through life at any pace other than the one he chooses.

Despite being so frail Ali was positively Yoda-esque at times. He was listening to his brother and sister having a heated debate one day about who should be going to the park. From the sofa he piped up – ‘Life is life – you just need to get on with it’. An extraordinary thing for someone so young to say. Ali continually came up with comments like the that left us speechless.

Right up to the end of his life Ali showed grace and dignity and was content even though he could do so little. His mental strength and strength of character kept his body alive – and he was still able to give strength to those around him.

Most children through childhood show glimpses of the people they are going to become – but Alastair had become a complete person at the age of only 6. Everyone he met fell in love with him and adored him and he touched the lives of many. He knew what he wanted in life and how to achieve it – often using humour.

In the word of our wonderful son – ‘Life is life – you just need to get on with it’. And we will, with Ali in our hearts always.

 

Our Sweet, caring, sensitive, gentle, funny, brave, clever Ali.