Making even a small difference to someone’s life is so rewarding

7 June 2016

Malachi is my youngest brother; he is 8 years old. If you met Malachi, you’d think he was a normal 8 year old – he’s chirpy, he’s cheeky, he’s funny and quite the lady’s man – if it weren’t for the cane which he uses to help him know where he’s going. Malachi has Neurofibromatosis Type 1, a genetic condition that manifests in different ways in different people. For Malachi, it came out as a brain tumour on his optic nerve that caused him to lose his sight before the age of 2.

At 15 months old, Malachi started an 18 month course of weekly chemotherapy. The chemo made Malachi really poorly and stopped him eating normally as it kills the appetite, so he was fed through an NG Tube that went up his nose and then down his throat and into his stomach. Myself and Zech, Samuel and Ayesha took it in turns to hold the feed up and flush the tube with water. It was at this point that I was referred to the local Young Carers project, aged 13, along with my brothers Zech and Samuel. My sister Ayesha was referred later, when she was the right age. 

Malachi stopped Chemo in 2011 but was still tube fed until he was four years old, when he began eating smooth foods; baby food jars, yoghurts and chocolate mousses. It was like weaning a baby from bottles onto solids, except Malachi was 4. It was hard work but so exciting! Zech, Samuel, Ayesha and I now took it turns to feed Malachi properly and I moved from secondary school to college to study childcare (as if I didn’t do enough at home!) 

In 2013, Malachi began complaining of headaches and was rushed in for an emergency MRI which flagged that there was a lot of swelling in his ventricle (the part of the brain that drains the fluid). Malachi was sent down for brain surgery to fit a shunt, which would help his brain drain the fluid and keep the ventricle down. As I was older by this point, I would come home from college and make dinner for the others, or stay overnight with them while dad stayed with mum and Malachi at the hospital. The complexity of the brain surgery meant that things were very uncertain. Between March 2013 and April 2015 Malachi had 14 brain surgeries due to complications with the shunt. 

In the summer of 2013, I went on a bike ride with the local Young Carers group and was asked by the Support Worker what my plans were now that I had finished college – my answer was that I had no idea but it needed to involve a full time job as mum and dad needed my support financially as the benefits would change once I was no longer in education, and I was almost 18. It was on this bike ride that I was offered an apprenticeship with the Young Carers project based in the Hub. 

Working for the Young Carers project has been amazing! I feel like I’m giving something back, almost like a thank you for the support that was given to me. And at the same time I’m helping other young carers who are going through what I’ve been through! My managers and the rest of the staff are so understanding too! When Malachi was having all of his brain surgeries, I had to take a lot of time off to take Zech, Samuel and Ayesha to various appointments and it’s so good to know that I have a supportive workplace where they understand that sometimes, life at home gets a little crazy. Don’t get me wrong, I won’t take time off unless I absolutely have to, but knowing that I can if I need to is a weight lifted off my shoulders! 

I’ve been working on the Young Carers projects at Imago now for nearly 3 years and have seen so much variety in the different caring roles. I completed my apprenticeship and now have a permanent job as the Young Carers Trainee! I love working where I do and knowing that I’m making even a small difference to someone’s life is so rewarding!