Brian’s daughter, Nicola died at 3 months old, and his son, Graeme died at the age of 40, after a life-long battle with Alstom Syndrome. Brian was struggling to come to terms with losing both of his children. Therefore, he was referred to Teesside Hospice for bereavement counselling, which has helped him to open up about his experiences.

“At the age of two, we realised Graeme was having issues with his eye sight, and when he was 6 years old he went blind. He also starting having issues with his hearing. Graeme had a lot of problems, including type 1 and type 2 diabetes, we knew something wasn’t right. Therefore, we took him for a second opinion. At the age of 13 he was diagnosed with a rare condition called Alstrom Syndrome”

Alstrom Syndrome is an ultra-rare genetic disease, with both parents carrying a faulty gene, although most likely unaffected. It affects around only 80 families within the UK with many side effects, causing a difficult quality of life. 

“When Graeme was two-years-old we had a baby girl, when she was born she had to have a blood transfusion. When she was 3 months old, she got a chest infection and died shortly after. We’re not sure whether she also had Alstrom Syndrome, but I guess we’ll never know now.

Towards the end of Graeme’s life, he was struggling with a lot of the side effects of Alstrom Syndrome, he needed a dialysis performing on him frequently, which I learnt to do myself through James Cook Hospital.

But he never let this pull him down, he always pushed himself to do whatever he could. He went to Durham University and studied European Studies and Politics, as well as going back to study Business Management. He had his own business which helped other blind people to be able to use computers. He worked all of his life, and even did a leadership course which allowed him to be a manager at the HMRC offices in Thornaby.

He was a big sports fan, he loved going to Speedway and the football. He always wanted to do things, even up until the day he died. We had a static caravan at Primrose Valley, my wife was down there with her Auntie, he wanted to go and see her. So on the Saturday we went. On the Thursday prior to his death and visiting the caravan he wanted to go to the speedway, he was struggling to walk as he was quite out of breath, but he wanted to see his friends. Little did we know, that was going to be the last time he would see them.

On the evening he wasn’t very well, so we had decided to go home the next day. We were just about to leave and as I went to get my coat I heard a distraught scream from my wife and ran back into the room where she was holding his hand, he had died. We called the ambulance and tried resuscitating him for 15 minutes, until the ambulance came, but there was nothing else we could do.

My wife and I, we devoted our lives to him, as his parents we bought him into this world and we had to give something back. When he died it was really hard. I struggled with my emotions. We had to sell the caravan as it was just too much for us to take in at once.

When I went back to work, I was offered counselling, the first one didn’t work for me and I really struggled to connect with them. The second was better but I only had 6 sessions and it didn’t work for me.

In 2019, my GP referred me to Teesside Hospice, that’s where I meet Sara (Head of Bereavement Counselling) and she helped me to understand my emotions, the grieving I hadn’t done and coming to terms with Graeme’s death.

We did a few sessions at the Hospice, but then the pandemic hit, which meant the sessions continued virtually. Since coming to the hospice it has helped me massively, as I wasn’t very open about Graeme’s death.

You don’t expect any of your children to die before you and have to bury them, never mind both of them. Sara also got me to open up about my daughter, I didn’t realise but I hadn’t grieved properly for her. People think because it was only 3 months you can’t have formed a relationship, but that’s wrong. You do, and you need to grieve.

 Whilst in lockdown I decided I wanted to do a course on grief, which has also really helped me. I’ve learnt about myself and the process of grief. I used to keep myself busy looking after Graeme and doing things for him, he wouldn’t want me to stop my life and now I have even found new hobbies now that help me to switch off and stop my mind from wondering.

I retired last year and in January 2021 I finished my counselling with Sara. In September, I went back to Teesside Hospice to start volunteering within the counselling building on reception and I am so happy I am able to give back for what they’ve done for me.”

Bereavement, loss and grief can cause us huge pain and sadness. It can leave us feeling alone, confused and fearful. If you need more help click here.


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