We are trying to raise £2500 (ambitious I know!) for Tayside Children’s hospital, we hope to donate to the cardiac clinic to purchase what they feel would benefit the children they treat, and a Ps5 for the ward (Parker’s choice of essentials)!

A little about our why;

Parker, our 7 year old son has never had more than a cold, other than an eye infection in his life. He has always been super active (slightly wild), into every sport possible and always keeping up with friends his age and older and us on our toes.

September 2024, Parker gets some flu like symptoms with a temp that comes and goes, this goes on for 3/4 weeks before progressing to higher temps and Rigors. I had Parker at the GP on numerous occasions to be told it was likely a bad run of viral infections that had ran concurrently, and growing pains causing sore legs. It was difficult as once Parker had paracetamol he would feel much better and his temp would come down so there wasn’t much for the GP to see. They checked ears, throat, urine etc with no concerns they sent us away for the 3rd time.

Parker had his 7th birthday party with no issues, a football party, running about with his friends for hours on end. The next day he returned to school feeling fine, at around 1030 the school phoned to say Parker had been out at break and was now unable to stand / walk and shaking uncontrollably with a temp of 39.9. I got to the school and took Parker straight into the GP who was still confused as to what was going on, she gave Parker paracetamol and again he reacted positively. We got advice from a further 2 GPs who were also at a loss so they sent us to Ninewells hospital for some further tests.

We spend the day in Ninewells, completely fine and no temp, we were just about to be discharged however it was shift hand over and the previous shift hadn’t filled in Parker’s observations so the new shift came in to do it (someone was watching over us that day!), the consultant asked if any of the previous doctors had mentioned hearing something “off” with his heart, and told us we were going on where…

From there it all went from 0-100 pretty quick, we were transferred to Glasgow Sick Kids for specialist care by emergency ambulance where they diagnosed Parker with Congenital Heart Disease (meaning he was born with it) - the scariest time of our lives which I’m not sure we will ever get our head around - although scary I felt relief that we were getting somewhere with what had been going on the past few months, but this diagnosis still didn’t explain the scary temperatures and rigour's, so after numerous PET, CT scans, X rays and bloods not showing anything that would give an explanation, they treated Parker for Kawasaki disease, this was auto immune infusions meaning that he wasn’t fit for open heart surgery for 4 weeks to fix his heart (it later transpired Parker was wrongly treated and didn’t have Kawasaki disease).

We got home a week or so later, thinking it was now just a waiting game for him to be strong enough for surgery, I KNEW in my gut something else was going on and they missed something, I questioned on so many occasions everything and was told I was anxious from the trauma of the last month and they had given Parker a full MOT, they couldn’t have missed anything. He did have a very rare bacteria appear in his bloods but we were told it was absolutely impossible to be accurate as Parker would be unable to sit up, would likely be unconscious and certainly wouldn’t be making footballs out of paper towels in Glasgow PICU….we were told it was a cross contamination in the lab and his bloods were ok. We were let home on open pass with the plan for OHS in 4 weeks time.

We got home at 3pm and by 7pm we had a call from the hospital to say they had in fact found something in his bloods, it wasn’t a cross contamination and he had an illness called Endocarditis. We had only just heard of it days before, having just found out and getting our head around our son having Heart Disease and all the risks, we were told how important and dangerous it was if he were to contract Endocarditis, never in a million years did we think he already had it.

We arrived to Ninewells (under the care of Glasgow) to be met by a consultant who had never come across a child Parker’s age with Endocarditis, he told us it is always deadly without intervention and it’s attacking his heart. I didn’t think I could be any more scared than when I found out Parker had heart disease but that night I never felt pain like it. I was so scared. From then we spent 10 weeks of daily treatment, bloods every 3 days, more PET, CT, X-rays. Parker is an unbelievably strong and resilient kid but this really took its toll, the pain from all the needles, having to be pinned down every day, being fitted with a permanent line (he couldn’t go under general aesthetic due to the Heart Disease so this was done only on local aesthetic), we were able to go home nightly on pass, we were called numerous times at midnight to tell us Parker wasn’t reacting the way they hoped and we needed to go back in, they didn’t know how to treat what bacteria he had as they couldn’t find the source of the infection (it’s usually mouth / teeth but his was clear), this 2/3 months is a complete blur, I don’t think I can bring myself to remember too much more.

Fast forward to end of January, Parker finally got the all clear of Endocarditis (after not passing the first and having treatment extended) and was ready for his Open Heart Surgery to repair what they could of his heart. We went to Glasgow Sick Kids where Parker had a left sided heart bypass and Thoracotomy (going from his spine around his front separating his ribs) a 8 hour surgery. Seeing your “fit and healthy” baby in a coma, with machines keeping him going is something that I will never ever forget, but it’s something I’m eternally grateful for, even more so after surgery and the professor told us his narrowing was so significant that he was months, if not weeks away from a different outcome, Parker’s heart had grown extra vessels to try and compensate for his heart giving up. I don’t know what we done to be so lucky but I’ll never forget it.

Parker, in true Parker fashion, recovered like no other, refusing to have a catheter or any pain relief other than paracetamol and ibuprofen and was up walking 2 days after being woken up!! My inspiration for everything I do!

Heart disease unfortunately isn’t something that goes away or that is “fixed”, but we now have the reassurance of weekly / monthly checks and a heart that is better than it ever has been in his life (an absolute wild thought considering this 8 months ago we thought he had a viral infection!) Parker is medicated and provisions have been put in place, that will likely follow him through his life. His blood pressure is something we are still struggling to control and therefore he has used a portable blood pressure machine (like a mini phone he wore as a backpack) which Tayside Children Hospital only has TWO of! 2 across the WHOLE OF TAYSIDE, that means if Parker has one, and another heart child has another, a kid may go without getting the right monitoring and medication, or we swap around!!

Tayside children hospital is an absolute amazing hospital with the kindest, most compassionate staff who go way above their call of duty but I can’t stress enough how under funded it is, the difference in resources between Tayside Children’s Hospital and Glasgow Sick Kids, it is literally a postcode lottery. Not to mention we have ONE Paediatric Cardiac Consultant and ONE part - time Cardiac Nurse for the whole of Tayside! An absolutely incredible team who I will never be able to thank enough, who have seen me more vulnerable than ever and have took time to educate me and make me feel heard and understood, who literally saved my child’s life’s, but ONE team of 2 people for the whole of Tayside. If the consultant is unavailable , on holiday, having a well deserved break, on a day off (like when Parker was first admitted), there is no other paediatric specialist in Ninewells Hospital to confirm diagnosis, plan a treatment or act for our kids.

If you’re still reading… 👏🏼

So Me & Derek and Parker’s Aunty Mandy are competing in Tough Mudder (physically the worst thing I have ever endured, and now I know what’s involved I cannot believe I am doing it again!), to raise as much funds as possible for Tayside Children’s Cardiac team. This will be the first of many fundraising challenges until we reach our target!

Please donate if you can, and know that every run / training I do, when I struggle, all I think about is how blessed we are that we can get up when we want and move, use our bodies and have the health to be able to do it without thought. Something I’ll never ever take for granted again.

Here goes challenge #1 Tough Mudder Edinburgh 7th of June 2025 ❤️‍🩹