Like many of the parents we support, Jacqueline has kindly shared her experiences of her son, Aarron’s liver condition in order to help other families . Now he is 17, Aarron has been using his experiences to help medical professionals who are treating other young people in his situation. First we hear from Jacqueline.
When I shared my story in 2021, I explained that Aarron, who has Alagille syndrome, has had surgery 36 times, including his liver transplant. Since then he has had five further operations and will undergo another next month.
One of the consequences of all this surgery is that he has mesh in his stomach to help do the job which muscle would normally do. This has split twice and needed to be replaced. His skin is so thin that stiches have to be kept in for much longer than usual. He even did his Bronze Duke of Edinburgh expedition wearing a special dressing but he was very determined to do it.
Because his situation is so unusual, in March 2024 he was invited to do a presentation on his experience to a nurses’ study day which was taking place at Hampden Park on the subject of treatment of skin conditions. It was the first public speaking Aarron had ever done but you wouldn’t have known it. The slides he presented which show close-up what he has been through were so graphic that he had to give a warning at the start, but his presentation was anything but gloomy. In fact he had his audience in stiches laughing and got such a great response he was then asked if he would present at an online study day, talking to a further 450 nurses.
Aarron at Hampden with his mum Jacqueline (right) and Claire, his tissue viability nurse, who organised the event.
Obviously presenting online is very different to speaking to people in person but it didn’t faze Aarron at all. He got amazing feedback and as a result, we were then both invited to speak to 350 doctors and nurses at a dinner in Manchester. I have to admit that I was nervous as this felt like a very grand occasion, but Aarron wasn’t at all. He sees it as his way of giving back and helping other people like himself.
Aarron has an amazing attitude. He has had so much to contend with that it would be very easy for him to feel sorry for himself but that’s not his way. He attends a high school for children with special needs where he is thriving. He enjoys football, volleyball, plays the electric guitar and the drums, he’s learning to drive and has already embarked on his Duke of Edinburgh Silver Award. He’s a regular at the Transplant Games and at the most recent event in Oxford he competed in volleyball, ball throw, football , high jump, 4 x 100 m relay and the donor run. His medals included gold in the high jump and bronze in the volleyball for which he was also awarded player of the tournament!
Such is his determination to overcome the hurdles put in his way, that when he left his primary school we donated the Aarron Higgins Never Give Up Award to recognise children with a mental or physical health issue who have had to get over extra obstacles at the start of their school journey. Aarron goes back every year to present it and loves doing so. We’ve had such a great response from this that we’re going to do the same when he leaves high school.
Aarron has little control over his complex health situation, but I am immensely proud of his attitude towards it. And if his recent presentations help other young people who are undergoing similar experiences, then that’s even better.
With Aarron’s permission, we share his personal reflective essay on his experience.
Hello everyone, this story is about a liver transplant that I had when I was eight, and it changed my life for the better. I was given a small piece of a liver from a man who had sadly passed away. However, I had a lot more operations before that, such as heart stents to expand the veins in my heart to help the blood flow better. Basically, when I was born, I gained a condition called “Alagilles Syndrome” which is liver disease that affects your skin making it itchy as the reduced flow of bile out of the liver may lead to the following symptoms: severe itchiness of the skin, yellow colouring of the whites of the eyes and skin. This can be treated with different meds and some patients even get transplants to help save their lives, which is what I had. Although my experience to start was not very pleasant, I am still alive and well and I have come a long way. When I had my transplant, it was basically four months of brutal torture, but I’m grateful and glad that its done and that I don’t have to deal with it anymore, although if I had to I would do it again one hundred percent I would.
At first my transplant went well but as time passed there were many struggles along with it. One of them I remember is that my bowel twisted and was getting worse. I was still somehow sicker than I was before the transplant, it felt like I was being poisoned which scared me to be honest. I mean I have never experienced this kind of thing; it was horrifying, I was wasting away as the hours went by. However, I was gladly dragged back from a discarded wasteland and brought back to the light with the amazing people that surrounded me with love, hope from my friends and family. Although to be perfectly clear my little sister was in the middle of a tragedy that she had no awareness of as she was so young. I mean she was just still a little kid just trying to enjoy the world, she had to stay at my aunties for months while I got better where she had lots of fun, but she probably felt she was being abandoned.
A couple of weeks into my transplant my brother came to help my mum and dad whilst my scar was open and getting examined and then I started having a big bleed. While I was losing blood and getting it pumped back into me again with massive syringes, me and my brother (Peach – that was his nickname), were hatching a Hatchimal which was an egg with a little robot owl inside. So, as I was bleeding out me and Peach were hatching this egg, which was very hard as I remember falling asleep, probably falling in and out of life whilst my brother doing his best to keep me happy and awake probably. It’s one of the many memories I have.
When I was younger I had so many operations that had lots of effects on me and to my everyday life. Coming back from something so traumatic felt like a wound of emotions. Because of this trauma I sometimes feel like I am always on edge expecting something bad to happen. After the initial transplant it took what felt like a thousand years for me to get better, and well enough for me to leave the hospital and finally come back home.
I feel like my parents suffered just as much as I did, they went through just as much of the brutality that I suffered though they saw more. My mum and dad outside the hospital shaking while lighting a cigarette. My dad, a very rigid man, and my mum, a very collected woman, seeing such atrocities happen to their child and having to watch it before their eyes, and can’t do anything about it. If I saw my child like that, I would sacrifice everything to help them feel alright and happy, as a bond between a parent and child is almost symbiotic. It’s a connection with a spark like no other. And to see such horrific events happen to someone who has so much meaning to them its mortifying to say the least. But they helped me through with a pulling strength of a thousand lions, so it was safe to say that they were my support through it all and still are. They will always be there to protect me and care for me even though they may pass on, I know they are there for me.
And I can say that they are happy of the man that I have become and happy and proud of all my achievements, they have raised me to strive to do anything I want and wish for they have shown me that even in the darkest hours there will always be light, And I have many friends I have an amazing and lovely partner who is by my side through heaven and hell, and I would do the same for her. They are another reason not to give up on life, I have an amazing group of friends who I can share a laugh with. And all these people have made a massive impact on my life, and to the man who gave me his liver I wish I could have met you my friend and I wish I had the chance to thank you for giving me a piece of you and a chance to survive and become a great person. This essay I write, thinking of how grateful I am for your sacrifice and glad and honoured to carry you with me for the rest of my life and I cannot wait to meet you when this is all said and done, to you sir….. may death bring us unity, goodbye and farewell.
