For the last few weeks I have been telling you about my mother, who due to becoming blind in 1956, had such a battle to keep us together.  Thankfully thing has changed dramatically, and today people who are diagnosed with any long term condition fare much better and are even encourage to do amazing things.


For example we have a remarkable young man in the support group who has been on an adventure of a lifetime, and I will let him tell you all about it himself.


‘Ever since I was young, my parents have never held me back despite me having Stickler Syndrome. I’ve dived off a boat on the Amalfi Coast, I’ve climbed Snowdon, been cliff jumping and swam on the Great Barrier Reef. Nothing has ever held me back. In Spring 2017 I had the opportunity to go to South Africa to help out at a children’s charity and my parents spurred me on to take the opportunity and apply.

Once I’d gained a place on the trip I was tasked with raising £2,140 to fund my trip and help the charity I would be staying with. This was quite the task! We were urged by the school to appeal to local businesses and organisations to help with our fundraising so I sent a letter to the Stickler Syndrome Support Group asking for some help on my adventure. They replied and generously agreed to help with my fundraising efforts. By April 2017 I had fully raised the funds for my trip with the help of the David Pilcher Fund for Young People whose main objective is to help young people with the condition to achieve something that would normally be outside their range.


I was now all ready to go to South Africa in July, and when July 20th came I was really excited but really didn’t know what to expect when I got to South Africa. Obviously, I was aware of the issues the country had faced in the past with apartheid ending as recently as 1991 and the country’s history of segregation; however, when I got there I was shocked that these issues were still prevalent in modern day South Africa. The country still lives in the shadow of the apartheid and Mandela is still held in high regard throughout the country.


In Cape Town, we drove past hundreds of houses half the size of my bedroom in which entire families lived. I knew of the poverty within the country but seeing it firsthand really put into perspective how fortunate I am to live in a stable environment, have plenty of food and water and free healthcare. They seem normal to me; however, I now realise how fortunate I am to have them. As we drove on we passed through areas of absolute poverty only a five-minute walk from gated mansions with tennis courts.



When we arrived in Cape Town, we took a cable car up to the top of Table Mountain to admire the incredible scenery of the Western Cape. The views were unbelievable! However, this was only a short stop and we headed off to the farm we were staying on.


The Goedgedacht Trust Farm is situated about an hour and a half from Cape Town and its aim is to enrich of the lives of the local children and young people from the mother’s pregnancy up to the age of 25. Their Path Out of Poverty program (POP) is how they do this. There are POP centres in both rural and urban areas around the Western Cape, each of which are run and maintained by some of the people in the area who work with the Trust. They aim to help in four ways: education and support, sustainability, health and nutrition and personal development. Sometimes, the children receive their only meal of the day from the POP centre. The farm itself accommodates some of them who cannot go home or don’t have homes; however, the farm is primarily for growing olives and accommodating tourists to fund the projects they run. People can come to volunteer and help with manual work on the farm or can help with the “POP kids”.

We arrived late, around 10 o’clock, and went straight into the main house to meet the people we would be staying with. We said quick and sometimes shy “Hellos” and were encouraged to sit and talk with the South African young people during food. After our meal we went into the barn for some “games”. These games turned out to be singing and dancing for almost two hours – what a warm welcome! We got a chance to talk to the “POP kids” more as well; one of them staying on the farm was Shaun a 19 year-old who grew up on the farm and is now taking leadership courses and running his own POP centre. He is such a lovely person, so positive and full of energy. Over dinner one day he asked us what we wanted to do when we’re older and after we had answered we asked him and he said that the thing he most wanted to do is to be able to visit the UK.


The next day we went into Cape Town to go ice skating and were partnered up with the young people from the farm. I was with Sebastiago who was shy at first and had never been ice skating before. He struggled on the ice for a while but by the end of the hour he was skating around without my help. There was more singing in the evening again!


In the week that followed I did manual work on the farm sorting bikes that had been donated, I visited a nursery and I helped design the obstacle course they are making for the farm. However, the undeniable highlight of the week was visiting the POP centres. Throughout the week I went to four different ones, some more than once, and was met by unconditional welcome in each one. We played and sang and danced and talked with the kids in the centres. Many of them would wave us off before walking home barefoot. It was a heart breaking experience.




However, the real heartbreak came at the end of the week when we had to part ways with the people we had now connected with. They sang for us and we sang for them and when we were leaving, Shaun came onto the bus for one last goodbye. Although I know that they must get many people coming to stay on the farm, it was obvious to us that we each meant something to them. Needless to say, it was incredibly hard to leave that day and incredibly hard to go home to our large houses in our safe neighbourhoods.



The experience that the Stickler Syndrome Support Group allowed me to have what was, for want of a better phrase, life changing. It contextualised the poverty we see on TV and put into perspective how we are able to live. Although we may moan about our lives, we must remember that no matter how hard our jobs get, no matter how much work we have to do, no matter how much rain prevent us from playing outside, we are incredibly and undeniably fortunate and we must never take that for granted.


Thank you for supporting me on this adventure – I would recommend it to anyone.

Steffan Hawksworth (age 17)


Needless to say, I feel immensely proud of this young man who despite all his own health issues is doing something for others less fortunate than himself, Well done Steffan