The Henry Gloag Fund

Henry was born on 18 August 1996, bringing much joy and the little added surprise of an extra chromosome. Having Down’s syndrome was very much part of who he was but just like the colour of his eyes, the shape of his nose and how quickly he learnt, it did not define him. What defined Henry was his character and the way he charmed anyone who met him. When he was about one years old, he needed open heart surgery to repair a hole in his heart. This operation was a success, but he had a nasty infection in his wound which wouldn’t go away and subsequently needed an emergency operation to cut out the affected area around his heart. This was a very worrying time and resulted in him having a large scar down his chest. Henry was only little, but he coped well in hospital. Little did we know that a few years later this resilience would be put to the test again on a much larger scale.

Over the next few years, as Henry grew, he prospered, and although he did reach the different development stages later than other children he was quite determined and relished any learning. His cheeky, lovable character quite often meant he was the star of the show, and he was always ready with a smile and a hug for you.

At the age of three he was delighted when his baby brother George came along and together, they became quite the little double act. They taught each other so much and the brotherly bond was very evident from the beginning.

Henry started nursery at the local mainstream school and made lots of new friends. The class stayed together going into primary school and Henry absolutely loved his days there, surrounded by his pals who he quite often referred to by their full name (very official!). He was loved by pupils and teachers alike and worked hard on his reading and writing. He could quite often be found in the book corner or with the musical instruments. He loved musical programmes and films. His favourites were The Wizard of Oz, Annie, Oliver and Bugsy Malone, and he’d enthusiastically join in with any singing and dancing. He took part in school productions without reservation and embraced his roles as an urchin in Oliver and a bumble bee in Alice in Wonderland.

The other thing that Henry loved was birthday parties! Every year he invited his whole class to his party and because this was in August, quite often the party would be in the garden with a bouncy castle, pass the parcel, lots of fun games and party food. Henry was particularly partial to sausages and, of course, ice cream!

Just after his sixth birthday we had a lovely little holiday in Anglesey with his grandma. Henry and George spent time playing on the beach and in the park, and we were feeling refreshed and ready for the new school year.

He started back at school in September 2002 feeling very grown up going into Year 2. But, within a couple of weeks, one of the helpers at school mentioned to me that Henry was very tired during the day, and she thought maybe he could be anaemic. So, I took him to the doctors where Henry was given a blood test. The doctor phoned me at home on a Saturday morning and said that I should take Henry to the hospital straight away because he wasn’t happy with the blood test results and Henry should be checked out.

I was only a little concerned at this point but when we arrived at the local hospital, they transferred us by ambulance to Manchester Children’s hospital. They said that when we arrived, we would go to the children’s oncology ward but not to worry too much because it was just to carry out further testing. That is when I started to worry!

Henry fell asleep on my lap in the ambulance and something deep inside me knew what was happening. Within the next few days, it was confirmed that Henry had acute lymphoblastic leukaemia (ALL) and would begin three years of treatment. My gorgeous little boy was so poorly but the prospect was good, ALL is very treatable with high odds of a full recovery.

We spent many weeks as an inpatient on the Borchardt Ward where Henry yet again became a little star, even with everything that he was being put through! He endured several Hickman lines, chemotherapy, many lumbar punctures, suffered a blood clot in his leg and following so much invasive treatment, his muscles became weak. He was unable to walk and began to shuffle on his bottom to get around and was given a wheelchair.

After his second round of chemotherapy, Henry was able to go back to school and started to regain some strength in his legs. I was so proud of him when Father Christmas came to visit his school and in front of all the pupils, he managed to stand and walk towards Santa to get his present, and everyone clapped and cheered.