In recognition of World Scleroderma Day today, we caught up with a familiar face at the RCH, Harrison Pennicott. The brave nine-year-old has spent five years battling the rare skin and auto-immune disease.
Scleroderma is a chronic connective tissue disease where hardening of the skin is one of the most visible symptoms. Harrison – or H – suffers from the rarest form of the disease and is the only child in Australia battling the condition known as disabling pansclerotic morphea (DPM) in full.
H has undergone multiple courses of treatment including a bone-marrow transplant, chemotherapy and a stem cell donation from his older brother Miller. Since Christmas Eve last year, H has now been undergoing apheresis. This treatment involves temporarily removing the blood, separating it and getting rid of the blood containing disease provoking elements, before inserting it back into the body.
H’s mum, Leesa, said that the apheresis treatment has been a great success so far.
“Harrison’s condition is just so rare that sometimes, even the doctors don’t know what to do. We are all learning things as we go along – the recipe we have going is working really well for him now,” she said.
Although H’s spirits are generally high, scleroderma has seen major effects on both his physical and psychological wellbeing. Most recently, H stopped eating solid foods as he thought something was stuck in his throat.
“He has lost so much control in his life that anything he can control, he tries to. We did all the scopes and nothing came back, but H was later diagnosed with globus hystericus. This is where you hold really deep emotions and haven’t let go of something, so your body creates some type of hysteria. For him, it was choking on his food. I took him to the psychologist for two weeks in a row and this fixed it which is great. It just goes to show the multifaceted impacts,” Leesa said.
“The older he gets, the more he understands now which makes it harder. Maybe three years ago I wouldn’t have thought this worried him too much, but the longer we go on the more you realise it really has. Five years is a long time.”
Despite the debilitating nature of his condition, Leesa and H have not let it stop all the fun things in life like holidays, spending time with friends and family, going to school and being a kid.
H has close ties with the Essendon Football Club and can often be seen hanging out with captain, Dyson Heppell. This year, H was given the opportunity to run out with the players onto the MCG.
“I came home from school one day and mum said you’re going to toss the coin at the MCG, I thought no way!” Harrison said.
“We went to the footy and I ran out on the field and met some of the players. After that, I went in the middle to see Max Gawn and Dyson, then I flipped the coin. It was so cool.”
While at the RCH, H keeps all the nurses entertained with his bright and bubbly personality.
“I have a nurse who goes for Hawthorn and we made a deal with her. If Bombers won, she had to wear an Essendon scarf for the whole day – but guess what, we won, and she didn’t come to work! She is in big trouble now,” joked Harrison.
Leesa and H are currently visiting the RCH weekly and continue to fight the battle and raise awareness about scleroderma to give everyone insight into this rare disease.
To learn more about World Scleroderma Day, visit the Scleroderma Australia website.