Hiking the Camino De Santiago for Children with Disabilities

Rozette walks the talk for children and young adults with disabilities

Rozette Botha will again hike 320 km to raise funds for new premises for Queen Butterfly Foundation, a stimulation centre for children and young people with profound disabilities in Roodepoort.

This time, the avid hiker will be walking a substantial portion of the Spanish Camino, Camino De Santiago, in memory of her son, Ruan, who passed away from Carbohydrate-deficient glycoprotein syndrome when he was only 5 months and 21 days old.

Ruan was the first South African to be diagnosed with this rare disease, which results in severe psychomotoric and mental retardation; dysmorphism; coagulation abnormalities; and dysfunction of many organs. Had Ruan survived, he would have been severely disabled, unable to speak, walk or do anything for himself. During his short life, he became blind and deaf. Ruan was also fed through a tube in his stomach because he could not feed and was permanently on oxygen as he stopped breathing 19 times a day. He also struggled with septicaemia every second week and was on eight different medications a day to treat it.

Meanwhile, Rozette’s brother also has a disabled son who lives in a home for adults with disabilities, yet another reason why children and adults with disabilities are very close to Rozette’s heart.

“This is my way of honouring Ruan’s short life. There is no better way of doing this than by supporting a team of individuals who are doing such excellent work in caring for children and young adults who have disabilities, while also providing much-needed support to their families,” Rozette says

Rozette walks the talk for children and young adults with disabilities

Rozette Botha will again hike 320 km to raise funds for new premises for Queen Butterfly Foundation, a stimulation centre for children and young people with profound disabilities in Roodepoort.

This time, the avid hiker will be walking a substantial portion of the Spanish Camino, Camino De Santiago, in memory of her son, Ruan, who passed away from Carbohydrate-deficient glycoprotein syndrome when he was only 5 months and 21 days old.

Ruan was the first South African to be diagnosed with this rare disease, which results in severe psychomotoric and mental retardation; dysmorphism; coagulation abnormalities; and dysfunction of many organs. Had Ruan survived, he would have been severely disabled, unable to speak, walk or do anything for himself. During his short life, he became blind and deaf. Ruan was also fed through a tube in his stomach because he could not feed and was permanently on oxygen as he stopped breathing 19 times a day. He also struggled with septicaemia every second week and was on eight different medications a day to treat it.

Meanwhile, Rozette’s brother also has a disabled son who lives in a home for adults with disabilities, yet another reason why children and adults with disabilities are very close to Rozette’s heart.

“This is my way of honouring Ruan’s short life. There is no better way of doing this than by supporting a team of individuals who are doing such excellent work in caring for children and young adults who have disabilities, while also providing much-needed support to their families,” Rozette says.

It was very important for Rozette to help this a smaller institution that does not receive government funding. As a non-government organisation, Queen Butterfly Foundation relies heavily on donations to operate. School fees paid by parents barely cover the operating costs of Queen Butterfly Foundation, currently operating from church classrooms. Unfortunately, at the end of February 2023 the church had to give the Centre 3 months’ notice to vacate the classrooms due to changes in their own constraints which leaves Queen Butterfly Foundation in desperate need of new premises to accommodate their growing numbers.

What sets Queen Butterfly apart is the individual, expert and hands-on care that it provides to children and young adults to help them grow their levels of functionality, communication and independent movement. Therefore, the foundation only accepts a small number of children so that it can maintain its very low staff-to-child ratio and its high quality of service.

As a small foundation, it is also often overlooked by potential donors and sponsors but its impact on the Roodepoort community is far-reaching.

Still, the foundation now needs about R70 000 a month to continue providing the quality care that it does, and your help is needed today!

Queen Butterfly Foundation’s founder, Palesa Mofokeng, who has worked with children and young adults with profound disabilities since 2004 says, “After working with children with disabilities for over a decade, I decided to branch out on my own and open my own foundation in 2015 because I wanted to implement my own ideas that I believed would make a substantial difference to the lives of children and adults who have disabilities. I believe that our model at Queen Butterfly Foundation sets the benchmark for high levels of therapeutic stimulation and care, and it is my long-term goal to eventually branch out and replicate it in other communities.”.

Palesa is hoping that, together with other fundraising initiatives, Rozette’s walk will raise the R500 000 that is needed to immediately secure new dedicated premises which will give the organisation a place to lay down roots. The aim is also to attract other potential donors and long term sponsors looking for a worthy cause to invest in, to help grow the organisation’s sustainability.

Rozette will be hiking 320km of the French Way from Leòn to Santiago De Compostela. Her journey will begin on 21 May 2023 when she departs from OR Tambo International Airport and returns to South Africa on 16 June.

Rozette is funding her entire trip so all the funds that she raises from this initiative will go directly to Queen Butterfly Foundation.

“Considering Rozette’s story, she has a strong connection with the children and young adults in our care, as well as their parents. There is, therefore, nobody better to be an ambassador for Queen Butterfly Foundation on this journey. I know that Rozette’s mission will be a resounding success, especially in term of raising awareness for people living with disabilities. We are extremely appreciative of her efforts, having also partnered with Rozette on a similar initiative in 2017. It created so much awareness around the important contribution that Queen Butterfly Foundation in the Roodepoort community. We just need to achieve this on a larger scale this time,” Palesa concludes.

Be a hero! Help save the day by following and supporting Rozette’s brave effort through donations big or small to her BackaBuddy crowdfunding project to secure new premises for our special needs children at Queen Butterfly Foundation.

It’s so easy to help. Click on our BackaBuddy link. Donations big or small all make a collective difference.

Thank you for your generosity.