Jamie’s Story in his wife Christie’s words:

“In March/April of 2020, I like many others, had to stop working as a hairdresser due to the Covid restrictions set in place to limit the spread of the virus. Jamie, as a farmer and essential worker, was able to carry on working in the job he so dearly loved.

As the restrictions began to lift my hopes of returning to work were dashed when it was announced that children would be returning to school in restricted groups. At the beginning of the new September term our children were able to return to school,  allowing me to return to work. Oh, how quickly that was to change.

On Tuesday 20^th of October, Jamie came home from work at lunchtime complaining of pains in his chest, neck and head. He was feeling quite poorly and so I persuaded him to let me take him to A & E at the QEH King’s Lynn. 

Upon his arrival at the hospital he was seen promptly by the emergency doctors and it was concluded that he was suffering nothing more serious than some gastric problems. However, he was told to report to his GP if the symptoms persisted. 

Persist they did, and on the 22^nd of October, just two days later, I called an ambulance as Jamie was in severe discomfort and was having trouble catching his breath. Several hours after his arrival at the hospital, and following some tests he was informed by the medical team that it was likely he was suffering from a severe chest infection or possibly a clot on his lung. He was discharged from the hospital and told to stay at home where he would be contacted by phone and a treatment plan would be discussed.

The morning of 23^rd of October arrived. It was our wedding anniversary but Jamie was in no mood to celebrate. He had, in fact deteriorated further. Again, I called for an ambulance but was told that one wouldn’t be attending as it was deemed to be a continuation of the problem of the previous day and that we should wait for the telephone call from the hospital. By now I was in a state of panic and very concerned about him and so took the decision to drive Jamie to the hospital where he was once again admitted to the A & E department.

After some considerable time and further tests Jamie was able to call me from the hospital to give me an update of the situation. Remember, at this time we were still in the grip of the Covid virus and wasn’t allowed to be with him in the hospital. He told me that the doctors thought he’d suffered a heart attack and that the team at QEH were liaising with doctors from another hospital. We now, of course, know that they were in contact with Papworth hospital in Cambridge. Further examinations concluded that he had a tear in his Aorta and that he would need emergency surgery.

He was transferred to Papworth that evening and following treatment to stabilise him he was in surgery the very next morning. Jamie remained in Papworth for 2 weeks and, still unable to be with him, I drove to Cambridge daily along with our two children so that we could catch glimpses of him at his hospital window. We are eternally grateful to the nursing staff for their efforts in getting him into a position where we could see him.

Long periods of isolation as a family continued following Jamie’s return to our home. His vulnerability to infection and illness was a burden on us and we went through some very distressing times. Uppermost in the mind of the consultant that we feel saved his life was his young age. At 32 years old it was unusual to see such cases present and so he ordered some tests to see what had caused the initial problem.

Jamie’s recovery was a long process, as one would expect, him having had open-heart surgery. Soon February came around and it was time for a follow-up CT scan to assess the progress of his recovery. We were not prepared for the news that the graft on the Aorta had failed and that a further open-heart surgery would be needed to correct it.

Ten more days of post-operative recovery in hospital followed, along with another three months of isolation.

In the July of 2021 we finally had confirmation of what had caused Jamie’s illness. And so we were introduced to Marfan Syndrome. Until, by now, totally unknown to us and many, many others. We spent many hours researching the subject to garner as much information as we could to help us understand it. Finding out that it is a hereditary condition immediately sent us into a spin and Jamie raised our concerns with his consultant, who it must be said, along with his team, had been nothing short of brilliant with us all the way.

Tests were arranged for our children to ascertain the likelihood of them suffering the same fate. 

In September of 2021 Jamie once again attended the hospital for a routine CT scan to assess the ongoing recovery of his surgical repair. Once again, bad news followed. There was an unacceptable amount of leakage from the repair site and a pool of fluid was forming around the graft. A much smaller procedure was needed to correct the problem.

Jamie’s next scan was due in the May of 2022. He never made that appointment. Sadly Jamie passed away on the 20^th of April 2022 from an Aortic Aneurysm caused by the failure of the graft. Quite simply, due to the Marfan Syndrome, his arteries were too unstable to take the grafts.

Jamie, at 34 years of age had succumbed to a largely unknown illness. The rarity of Marfan Syndrome and the ignorance of the syndrome by the doctors treating him in the first instance  was partially the cause of his untimely death. It is my hope that in some small way we can bring Marfan Syndrome to the fore and make more people aware of it. Along the way, hopefully, we can raise some funds to help with further research into the condition so that others may not have to go through the trauma that befell our family.

You may be pleased to know that following genetic testing our children do not have Marfan Syndrome. For that we are thankful.“

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.