Seven year-old Axton lives in the small rural town of Alton, South Taranaki with his mum, step-dad and little sister Ellie. He loves spending time at the beach, riding his bike, hanging out with wider family and being a boisterous, fun little boy.
Mum Diana-Leigh was pregnant with Ellie when Axton began having unusual symptoms. She took him to what she believed would be a routine doctor’s visit at 8:30am, and by 5pm they were admitted to the national children’s hospital in Auckland. It was here that Axton was diagnosed with severe aplastic anaemia, with significant liver function disturbance. Aplastic anaemia is a rare, life-threatening condition in which the body stops producing enough new blood cells. It can result in fatigue, infections, and uncontrolled bleeding. “As a parent, the day Axton was diagnosed was one I’ll never forget,” says Diana-Leigh, “initially you feel numb, then it’s the hardest, most heart-wrenching emotional rollercoaster you’ll ever experience.”
Axton was immediately put on a treatment plan that included immunosuppressive therapy and up to thrice-daily platelet transfusions due to his liver function and uncontrollable bleeding from his mouth and nose. Once his liver was fixed, he could go on a list for a bone marrow donor; seven months later, Axton was matched to a donor from Germany. “His journey has been really tough,” explains Diana-Leigh, “even a small prickle in Axton’s foot turned into surgery from an infection, as his immune system is non-existent.” Axton has been on his journey now for almost one year and in that time has faced chemotherapy, multiple surgeries and treatments that “you never wish to see your child suffer through.”
Axton and his family arrived at Ronald McDonald House in November last year and have remained at Domain House for most of the following year – 268 nights’ all up. “We’re still in and out, but we have basically lived there for the last ten months,” says Diana-Leigh, “when we first arrived we were greeted by the most welcoming and caring staff. It was such a relief.”
Staying at RMHC meant the family had the space away from the hospital to escape to, but still close enough in case of late-night emergency visits. They were offered an apartment so that Axton could be kept safe with his lowered immune system, and all of the necessities for baby Ellie such as a bassinet and pram. “The staff are incredible, they always go above and beyond for our family,” says Diana-Leigh, “they make sure to stop and chat with Axton and check in with me – showing such kindness and compassion and really brightening our day.” The family were blown away by the food, including how thoughtfully the pantries were stocked with snacks and ready meals when they were in a rush.
Diana-Leigh also gained strength from the other families staying at the House, explaining, “you get to know other parents going through a similar journey to your own. I found they really helped me to cope through the toughest times.” It was also through staff and volunteers that Diana-Leigh could open up and talk about what they were going through, which really helped her wellbeing. “There was no lead up for us. It almost hasn’t hit me yet how serious this all has been – almost losing your child isn’t something you can prepare for. The staff at RMHC have helped me to shift my focus and uplift my spirits in whatever way they can.”
She remembers a highlight for Axton which was when the North Harbour Rugby Club visited, and he sat with them chatting and receiving tickets to their next game. She says, “Axton has missed out on a lot of experiences at the House due to his compromised immune system, so it was really special to see him enjoying talking to the rugby players.”
The family were also in the House in the lead-up to Christmas last year, and Diana-Leigh was blown away by how much effort the team put into creating a festive environment for the families. “I lost count of how many trees there were around the House!” she says, “there were Christmas photos, gifts for the kids, it made it really special for everyone involved. It’s hard to accept being away from family over the festive season, but Ronald McDonald House puts its all into making sure your experience is the best it can be. It’s a different kind of Christmas, but it’s definitely a memorable one.”
Axton and his family are part of our end of year campaign, Season for Giving. We are aiming to raise enough money to cover the cost of every family that needs our services these holidays - roughly 100 children per day. If you are in a position to support families like Axton's, you can do so by donating here.