World Scleroderma Day: Harrison Pennicott’s incredible journey

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.

14 comments for “World Scleroderma Day: Harrison Pennicott’s incredible journey”

  1. Andrew

    Keep fighting Harrison you are so strong!

    Reply
  2. Magda

    We are rooting for you Harrison. Hope they find the magic formula for you soon.

    Reply
  3. Jo

    Keep up the fight H and Leesa. What an incredible duo you must be and the RCH team.
    Sending extra strength and courage to you both.
    Enjoy teasing the Hawthorn nurse!

    Reply
  4. Jody

    Seen you on the TV last week H while I was watching the game Go Bombers such an amazing little guy keep up the good fight

    Reply
  5. Eva

    Keep up your fighting spirit H. Make sure that nurse wears that scarf. We are all behind you!!

    Reply
  6. Rachael

    How cool that you are raising awareness on scleroderma day! Nice work mate!

    Reply
  7. Vanessa

    I had the absolute pleasure of meeting you last week H. I enjoyed watching you talk about your beautiful crystals. Keep up the good fight, you are a star!

    Reply
  8. Samantha Moffatt

    Keep fighting H! All of Australia is behind you. Well done for realising awareness around Scleroderma.

    Reply
  9. Lyn Davis

    Been following your progress
    You are a true warrior
    Wishing you all the best for the future your amazing

    Reply
  10. Gayle Capiron

    Hi I am a mother if Samantha Capiron who has just turned 18 & in year 12. Sammy had Leaukemia twice bone marrow transplant then 2 years post transplant chronic Graft versus just disease Scleroderma. Was only given 5./. Chance of survival. We came down to Royal children’s hospital Melbourne from Brisbane in April 2012. Sammy’s gvhd scleroderma was a rare late complication from her transplant. Her type was very fast and aggressive. We were rushed to Melbourne fir this trial if ESP photopheresis. Was given only 5./. Chance of survival. Sammy responded amazingly quick to this experimental treatment. She had overall 11 months of treatment. Well I’m happy to say it reversed a lot if her sclerosis scleroderma. This treatment regenerates continuily over time even when treatment has ceased. Please never give up Harrison!! You and your family are amazing!!! My daughter Sammy is now doing well with only underlying issues that are all manageable right now. I am sending you this message sweetheart to Never give up!! It is possible!!!! Sending love, hugs and positive energy to you fir a speedy recovery!
    Gayle. Ps. Treatment wAs with Peter Mac

    Reply
  11. David M cesefske

    You go H!!!! You are a true warrior and my Hero!! Love and prayers to you! You have the victory!!

    Reply
  12. Janelle Blight

    Looking good H, sorry but my Cats beat your Bombers last night.
    I just watched last nights recording of the game it was good to see you on TV raising awareness and much needed funds. Next year when we play the Bombers, let’s try to get it projected up on the Cats scoreboard to raise awareness.
    I should have thought about it prior to our home game. Next year.
    Go Cats. X

    Reply
  13. Susan

    Hi, my name is Susan and when my beautiful mother had these weird symptoms that led her Dr to believe she had lung cancer no-one could prepare us for “Schleroderma” let alone “Systemic” where the skin on her lungs was thickening. To stand by this beautiful women who went from such a well presented lady to a lady requiring full time oxygen but still not understanding what this terrible illness was was absolutely horrendous, her heart gave up working overtime for her lungs 22 years ago now but it still hurts each and every day as I still don’t understand why or how BUT to hear about H so recently as a Essendon supporter and huge fan of Dyson was overwhelming, my mother always said you never outlive your children and she was just so grateful it wasn’t myself or my sister – thinking of H’s family which puts life in perspective, go H you can beat this and to H’s parents OMG will now be thinking of you all each and every day

    Reply
  14. Hugo

    Harrison is an absolute legend. So glad we have people like Dyson Heppell in this world that make the absolute troopers like Harrison’s lives better. Great job to his brother Miller, the essendon footy club, the Royal Childrens hospital and all the living legends with Scleroderma. Spread Positivity.

    Reply

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