One week ago a family said goodbye to their boy for the last time. I only met Thomas once or twice but that didn’t stop his death hitting me hard.

When I heard that he had been admitted to intensive care in early December I was hoping so much that he would pull through. I sobbed for days when he could no longer carry on. And on the day of his funeral I picked Pudding up from school and held him extra tight for as long as he would let me.

From the moment a parent hears about the diagnosis of mucopolysaccharidosis, the death of your child becomes a painful reality. It may depend on many factors – treatments, bone marrow transplant, early diagnosis – and may not come to pass for many years yet. But the knowledge of the possible hovers there anyway.

When I started making contacts with other MPS families after the first few months of shellshock it was a welcome relief from the terrible isolation of hearing that diagnosis. Finally a chance to meet with others who just got it. Who didn’t need anything explaining and wouldn’t give you that look of panicked sympathy before awkwardly changing the subject.

Joining groups on social media provided answers to many questions that I had, but also showed the side of MPS that was harder to deal with. The older kids that were declining, and parents who were already mourning their losses. It was cushioned though, with the hope that maybe that wouldn’t be the outcome for Pudding.

The years passed and so did more children. Each one is heartbreaking, but still muffled a little by differences. ‘He’s much older than Pudding’. ‘She had a different type of MPS’. A drowning man will clutch at a straw…

Tucker. Matthew. Jack. Jamie. Names I knew but not well. Death and grief then marched on through families who were not just acquaintances any more, but had become friends. Ethan. Zack. Each one gets harder to hear about. Each time you wonder who is next.

Pudding turns 11 next month and Thomas wasn’t much older. They were both in the ‘chaos’ phase of MPS2 when they were tested for entry onto a clinical trial only a few months apart. (Thomas didn’t get in. Pudding did, though the benefits were sadly short-lived for him.)

I met his mum at a conference. We probably couldn’t be any more different in terms of background, experience, age, appearance and she’ll probably laugh at me for admitting that I found her rather intimidating to start with. But MPS has a tendency to dissolve away those barriers and I got to know an amazing person on Facebook, on the phone, and very occasionally in person – Norfolk is annoyingly far away from Yorkshire. Over the past couple of years, we’ve both seen our boys become quieter. We’ve both waited for our child to wake up from general anesthetic after a gastrostomy. We’ve both tried to balance the needs of our MPS child and their siblings. She’s not had an easy ride of it – let’s face it, MPS doesn’t give many people an easy ride – but she’s always been there to offer advice and support for others. Even after her own loss she continues to be generous in that way, letting me blurt out my emotions on here.

Because the emotions are inevitably there. Picturing him in hospital, knowing the discussions that took place with family and consultants, hearing about arrangements with the hospice… Knowing all that, it is impossible not to imagine us in the same position and wonder how long it will be.

On the day of Thomas’ funeral I so wanted to be there. To hug his mum. To cry for him, and for Pudding and for all the other children that MPS is stealing away. It just wasn’t feasible to travel that far, but I hope she knows that my heart was there with her.

I was nervous about writing this post. I knew that anything I wrote about Thomas would inevitably be more about the future that I know hovers over Pudding. And I knew that I wanted to find the right balance between expressing that and honouring Thomas’ life and loss.

So the best thing is to leave the final words to his mum. As she wrote on Facebook last week: ‘My darling boy I will always love you. You will always be with me and thank you for everything you have taught me.’

Dedicated also to the memory of Andrew who died the same week and was so supportive of my blog. xx