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On the 3rd September this year I plan to compete in Tenby's 11th Ironman in memory of our beautiful son Zach and my wonderful mum. It's a long distance triathlon starting with a 2.4-mile sea swim, followed by a hilly 112-mile bike ride, finishing with a four lap 26.2-mile run. Remembering the way in which both Zach and Mum fought every day to fight their health issues will provide me with all the motivation I need to complete the challenge and become an Ironman!

This is our story and why we are raising money for Ty Hafan.

In May 2019, after a straightforward pregnancy, our beautiful son Zach was born in Nevill Hall, Abergavenny. Without any warning or prior knowledge he was transferred straight to the neonatal intensive care unit at The Royal Gwent Hospital in Newport. It was here that we learnt that Zach had suffered a catastrophic brain bleed earlier in the pregnancy and diagnosed with congenital nephrotic syndrome. Throughout his stay on the unit Zach fought every hour of every day and we lost count of the times he defied the odds and continued to fight against the consultant's prognosis. He was clearly determined to come home with us and we finally achieved this after 10 long and challenging weeks.

Life at home wasn't going to be easy or straightforward for Zach but we all wanted to make the most of every opportunity. During our stay in the Royal Gwent, we were introduced to Emma from Ty Hafan, who visited us as a family on the unit. Initially we were extremely hesitant as we thought of a hospice as just 'somewhere you go to die'. After some very difficult conversations we realised we needed all the support we could get to help ensure Zach lived his best life, however short that may be. We learnt that Ty Hafan isn't just a hospice for sick children and palliative care but a place for respite and support for the whole family where you can escape from the hospital environment. There are some wonderful staff there who really do understand what families are going through. Zach faced a new battle every day but Ty Hafan helped us make the most of the good days and enjoy time as a family, feeling safe in the knowledge that we had support around us whenever we needed it.

When Zach was just 10 months old Covid hit and so visiting restrictions meant that only one parent was allowed on the hospital wards. Support from grandparents, family and friends was limited to visits in canteens and car-parks. During the long days and nights sat at Zach's bedside, we often felt helpless watching him struggle. Throughout the pandemic Ty Hafan remained accessible and staff were available to offer the additional support and reassurance we all needed during what was already a difficult time. They provided a safe environment which brought a sense of normality and allowed us to experience some special family-time when we needed it most.

Zach made it through to his first birthday and as we were enjoying a period of respite at home we organised a remote Zoom birthday for him as nobody was allowed to travel.

Sadly, once again, his time at home was cut short and Zach was readmitted to UHW Cardiff. After some extremely scary days and nights trying to manage his pain and symptoms our brave little soldier bounced back once more and made us all smile again. On the good days we went for walks in the Heath park where he had the chance to be a little boy enjoying the fresh air and sunshine.

After a particularly despairing period in early July 2020, Zach was moved back up to HDU and it was from there that we began to have conversations about returning to Ty Hafan, this time, for end of life care. We were all at breaking point and these conversations were the hardest we have ever experienced. The decision to take our little boy away from the noisy machines and clinical environment was incredibly difficult but brought us a sense of control that we hadn't felt for a long time.

During our first few days back at Ty Hafan, yet again Zach showed signs of improvement. It was a though he knew he was back in the safe and calm environment of the hospice and the limited interventions actually allowed him time to relax.

Sadly on Sunday 12th July 2020 our little hero passed away. We were together, just the three of us in a perfect room overlooking the sea. Holding Zach in our arms and saying goodbye was the hardest thing we will ever do and we'll continue to re-live that day for the rest of our lives. We are so proud of him, he was our beautiful little boy who went through so much in his short life. So many intensive care units, wards and outpatient clinics carrying out constant checks and tests, needles, ventilation, oxygen support, endless medication, but our amazing little star just fought and fought. We only wish we all had half his spirit, if things get tough then Zach and children like him should be our inspiration.

Ty Hafan continues to support us today, three years on, and they will be there for us as long as we need them. They offer lifetime support.

As a family we are so grateful for Ty Hafan. Our wonderful mum particularly enjoyed visiting us there and experiencing their unique care. Sadly Mum passed away last year after a long and difficult fight of her own, so this is for you too mum!

We would like to take this opportunity to thank our wonderful family and close friends for being there with us through every step of this journey. The support you continue to give us every day is often what keeps us going and we can't thank you enough 💙 .

All proceeds go directly to Ty Hafan and to help many more families like ours.

Thank you for reading...we are forever grateful.

Patrick, Ali & Z 💙 xx

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