Kgomotso Mphahlele is a mother of a 6-years-old little girl who is living with a type of Down syndrome known as trisomy 21, which is one of the three types of Down syndrome. Trisomy 21 is the most common type of Down syndrome which is caused when the baby is born with an extra chromosome in his or her body, rather than the usual two, present in every cell of the body. In this case, the child will have 47 chromosomes instead of having the usual 46.
With the high number of cases of trisomy 21, mother Kgomotso Mphahlele, is one of the many parents facing this situation of raising her daughter, Lehakwe, with this type of Down syndrome which has caused Lehakwe to have physical and mental developmental delays and disabilities. Even though Kgomotso has been going through this difficult time since 2012 when Lehakwe was born, she has found strength from her family who have fully supported her in all ways. “I was blessed with a wonderful family; I do not fall short of support.”
Talking about multiple conditions which encouraged her to start a non-profit organisation for the benefit of children living with Down syndrome and for their parents to be able to help them better, she says that meeting other mothers who were in her situation, some of whom lacked support, either from their partners or families and came from disadvantaged backgrounds, is one of the factors which motivated her. “I had met other mothers who did not understand that even if their children had Down syndrome, what could they do to help them that doctors didn’t do and all that,” she says. She understands that, unlike her, most of these mothers have limited resources, “I did research, I researched how I can help my daughter and she walked before everybody was aware that she could walk,” and now she wants to give disadvantaged mothers the opportunity to learn more about Down syndrome and be able to help their children to grow better.
“My daughter went through a lot of things but she was strong through it all, and her being my inspiration, she has so much love and strength, I mean, she only had her heart operation when she was two years old but she has so much strength and she has gone through everything but she is still standing and she is the most lovable person,” explains Kgomotso telling KwaTsaduza Times of how Lehakwe has inspired her to start the Apple of My Eye – Lehakwe Organisation. Besides having her daughter as her inspiration, Kgomotso says that she is starting the organisation to educate the community at large about what Down syndrome is and how they should treat people living with it, “basically, I started it because I needed to educate the community about what it is because the East Rand is one of the towns which don’t celebrate Down syndrome month which is in October, or they don’t understand these children, they don’t know what’s happening with them, they see her growing but not growing to her age.”
Telling the newspaper about how her daughter is doing now, she says, “she is a copy-cat, discipline is also a challenge because when you are too hard, the reaction you are going to get will not be what you were hoping for and everything has to be by example.” One of Lehakwe’s biggest challenges are speech, “speech is aligned with understanding, if she can understand it she can say it but if you say something and she doesn’t understand it, you have to start all over again and explain and that is currently our biggest challenge because we were looking to send her to mainstream school but it becomes a challenge if she can’t read and write.” Kgomotso has had a very challenging parenting journey but she rejoices as she sees her daughter getting there even though it’s taking time, “she is getting there and she is making sense more and more but it has been a really long way,” she says.
The 31-year old mother says that she wants other mothers to get the support they need from her. As much as she is unemployed, Kgomotso is working on getting the organisation registered and building it further. “We are still using Facebook, Twitter and email at the moment, I have also built a free website and I am trying to build social groups. The response is there but it’s a bit slow but we want to get people in conversations about this.” She says that once people are talking about this, she can form support groups and this depends on how much support she will get from the parents who are raising these little angels who need assistance, be it normal children or not because at the end of the day, all parents face different challenges when raising their children.
“It has started, it’s just that we take it one day at a time, using the response that we get, using the platforms that we have and financial constraints are not allowing us to go further than what we do but the word is being spread, like I said, Facebook, Twitter and we wait on emails and we are waiting on getting registered, from there, get funders.” Kgomotso has big dreams for her organisation and wants the East Rand to host its own Down syndrome campaign awareness in the near future. “I believe in developing people, anyone, I am talking about a person with no child, she needs to understand what happens and to also know that this is nobody’s fault, because, some people feel that it’s their fault when they have children like this, when you don’t know, you won’t know how to approach, hence most children are left alone, they don’t have friends.”
One of her biggest challenges are funding the organisation and she wishes to find donors once the organisation has been registered, she hopes to find help with building a centre of their own where they can be able to host support groups and other multiple activities she has already planned. “We can also have classes for our young ones, they can come and play, have their birthday parties’ maybe, but a centre where every single person with Down syndrome has a home where people understand and where people come to learn and we share knowledge with everyone.”
“I named the Organisation after my daughter, Lehakwe, which means apple of my eye, I mean, they all are the apple of our eyes and once we bring them up that way, we turn to love them beyond everything, imperfections, disability and all that but you’d love them beyond anything because they just become that ideal part of your life,” says Kgomotso.
Kgomotso is calling on all parents to participate in the conversations they have on their social media pages and groups to help one another and to also spread the word until everyone knows about the campaign. She is also inviting everyone who may be able to assist her in growing the organisation to better serve the Ekurhuleni communities to contact the organisation, contact details can be found on their Facebook page called Apple of My Eye – Lehakwe.