“Max was born 17 Jan 2016,” says Martina Harding. “He was perfect and a beautiful little brother for our daughter, Mila. But quickly we noticed that things were different for Max.”
Within nine weeks of their son’s birth Martina and husband, Glyn, had been told that Max had Spinal Muscular Atrophy (SMA) type 1, a rare genetic condition which results in a child with this diagnosis having an average lifespan of two years or less.
Max died peacefully at home with his family in Caerwent on 16 May 2016 aged just four months old.
“When you are given the news that you are going to lose a child you are in a space but you don’t know what to do,” says dad Glyn.
“It is like you are in a vacuum. Everything is going on around you but it is a different world that you are in.
“You don’t know what to do and the support we had from Tŷ Hafan was the only thing I kind of heard at that time.
“I’d actually done a charity bike ride to raise funds for Tŷ Hafan some years before I had occasion to use its services myself. You never dream that it is going to be you. And you don’t get to know the full importance of what it offers until you need it yourself and you experience what it offers.
“We needed something help and we grabbed what Tŷ Hafan offered with two hands.
“With Tŷ Hafan, they are straight with you. They tell you that they can’t make your child better. But they can help you through it.”
“Tŷ Hafan takes so much pressure off you,” says mum Martina. “They help to sort all the stuff around you – and this allowed me to spend time with Max, Glyn and Mila. All those precious moments that Tŷ Hafan gave us. We could just step back from those worries and pressures of everyday life and focus on us as a family.
“It’s not a condescending or patronising environment – Tŷ Hafan is clear with you that what is happening, is happening, they don’t shy away from it.
“They help you to guide through those days at your lowest. They show you that it is OK to cry. The care and love that we have received from Tŷ Hafan , and continue to receive from them, is second to none.
“We would not be as we are today if it weren’t for Tŷ Hafan .”
Mila was two and a half when Max was born. After his diagnosis the family were immediately referred to Tŷ Hafan .
“With Max’s diagnosis the prognosis was such that we didn’t know if he would even last the ambulance journey to Tŷ Hafan ,” says Glyn. “He did make it through and in the event we stayed about two and a half weeks in the hospice. We were given training with feeding Max by tube and we took him out and about with Adrian the nurse.”
“We got to know that place quickly because Max was not well,” says Martina. “If we hadn’t had Tŷ Hafan we would have been in hospital or by ourselves in the house.”
“People manage when your child is so poorly,” says Glyn. “But it’s the experience of how you manage that what Tŷ Hafan helps with. During your child’s illness and after it. That’s why we want to help now – we want to give so much back.
“Tŷ Hafan stood by us and guided us – they’re not just dealing with people dying there. The staff there are so knowledgable of what to do for all the family. The support Tŷ Hafan provides is priceless.
“We made memories there as a family, in that beautiful environment, in the craft room, in the kitchen, and even though Max’s life was short, those memories are ever-lasting.”
“And whatever that day had brought there was always a hearty meal on the table for us at Tŷ Hafan ,” says Martina. “That is so important.”
“We can still go back – speak to people who remember Max for the cheeky chappie that he was. It’s so nice to be able to go somewhere like that.”
In addition to providing the family with a safe and supportive haven in the very early days after Max’s diagnosis, Tŷ Hafan also gave the family the life-changing confidence that they could look after Max themselves at home.
“Tŷ Hafan gave us that confidence,” says Martina. “We could go home and take care of Max ourselves, safe in the knowledge that if we needed help or reassurance that Tŷ Hafan was there for us 24/7.
“We came home for a couple of weeks. Then we went back down to Tŷ Hafan and had another week there.
“We then had a a couple of weeks at home. Even on the day of Max’s passing, shortly after he died Pat and Kirsty were here to help us through that day. We had to wait for doctor to come and pronounce the death. Sometimes it’s the simple things that make the most difference. While we were waiting for the doctor Pat put the kettle on and Kirsty played with Mila.”
“We took Max’s body to Tŷ Hafan ,” says Glyn. “They prepped his room for him and there we were able to say our last goodbyes to him. The team read stories to him in the night. Then they were all there to see him off.
“Tŷ Hafan’s staff are sincere and honest. They are there with you and we’ve made friends for life there.”
Every year Tŷ Hafan holds two memorial services for bereaved parents, a winter service by candlelight, and, a summer memorial service. The Harding family find comfort in these services and they also visit the hospice and its memorial garden regularly as well as support the charity’s fundraising activities.”
“We go back regularly to Tŷ Hafan to pay our respects to Max,” says Martina. “We attend the bereavement services, we enjoy the annual fun day, and once a year we try to do something to raise money for Tŷ Hafan too.
“This year I took part in the Mums v Mountains challenge. We still walk together now and catch up and we’ve made lasting bonds with each other. Some of us have lost our children, some of us still have our children with us.
“We all know what emotions we go through. Losing Max would have been a much tougher journey without Tŷ Hafan . Having that support by your side is just incredible.”
“Unfortunately there will always be families who will need Tŷ Hafan in the future and we want them to have that support,” says Glyn. “Tŷ Hafan is a hospice – but it’s not just about dying, there is so much more that you do and that Tŷ Hafan gives you. Nobody wants to have to have it in their lives – but thank goodness it’s there.”
