Woodlands mother Lee Haskin says seeing her son, Connor, 2, fight for his life in intensive care as a result of his Down syndrome and West syndrome diagnosis was the catalyst for her to launch Connor’s Haven and Resource Centre in November 2014.
The organisation is geared towards advocating and supporting children and adults with special needs as well as their carers. The organisation, in partnership with the Uhambo Foundation, ShonaQuip, Rare Disease Foundation, Down Syndrome Western Cape, Natalies Circle of Love and Victoria Cares, bring much-needed services to children living with special needs.
At an event held on Wednesday March 22 at Northwood Hall in New Woodlands they brought a “hospital to the community” as the transportation of special needs children and adults poses a huge change for their carers. World Down Syndrome Day was marked the previous day, Tuesday March 21.
“They need regular physiotherapy; speech therapy; dietary advice and buggies. ShonaQuip is evaluating their buggies today to determine whether they have outgrown them or whether their buggies need to be repaired. The aim of today is also to conduct medical assessments and to determine if these children require any other walking devices. We want to ensure that a child with special needs never has to be on a waiting list for buggie ever again,” Ms Haskin said.
She launched the foundation after her son’s diagnosis. “He was born on June 19 2014 at Karl Bremer Hospital. After I gave birth, the nurses took him away and started drawing blood from him. When I asked them why, they said it was standard procedure with a newborn but I didn’t think so because I worked as a nursing assistant.”
Ms Haskin said she then overheard the doctor saying to a nurse that her son has Down syndrome.
“I was shocked and asked what he meant. They totally ignored me and the doctor said ‘Even if he has Down Syndrome; he is still your child’.”
Her son spent the next five days in hospital and during the following months he was hospitalised for jaundice. “The blood tests came back and confirmed the doctor’s suspicions. I also discovered that he has West syndrome which results in developmental delays; spasms and in some cases, epilepsy.”
Ms Haskin said her son’s health took a turn for the worst in August 2015 when his organs started to fail.
“I was out when my older son Collin, 11, called me saying that Connor was not breathing. When I got home he was cold and I had to perform CPR on him.
“He was rushed to hospital and the doctors said he didn’t have long to live. That is when I started praying. I told God that I accept my child as he is and I would just like to see him grow up.”
Connor made a miraculous recovery and with the help of Val Hoy who runs the Down syndrome support group at the Toy Library based at Red Cross War Memorial Children’s Hospital, Ms Haskin learned more about Connor’s condition.
“Before my son’s diagnosis I didn’t notice special needs children in my community. They were somewhat invisible in our community,” she said.
Natywa Bester of Lentegeur has a daughter Aakifah, 22, who was diagnosed with celebral palsy (CP) as an infant. “I didn’t suspect that anything was wrong with my baby during my pregnancy. The doctors also didn’t pick up anything during my routine check-ups.”
Ms Bester gave birth at Retreat Day Hospital via Caesarean-section.
“When I took her home I noticed that her head was floppy and she wasn’t reaching her developmental milestones. I went back to hospital and that is when I received the diagnosis. I didn’t know anything about the illness and I soon realised it would be something she would have to live with for the rest of her life.”
Ms Bester said Aakifah received her treatment up until the age of 18 at Red Cross Children’s War Memorial.
“She received all her physiotherapy, X-rays and appointments with a CP specialist.” However, when she turned 18 years old the hospital was not able to help her anymore and Ms Bester described it as “being thrown in the deep end.”
Ms Bester said the local clinic in her area does not offer the medical services that her daughter requires. “They don’t perform X-rays or check her hips, ears and throat. I only go there to get her medication. Adult nappies are also expensive,” she explained.
She said Mitchell’s Plain is in desperate need of a care facility for children and adults who have special needs.
“We don’t have the transport to travel long distances with our children and it’s very difficult to stop a taxi or a bus on the side of the road, with a special needs child in a buggie. The City’s Dial-a-Ride service is also not very reliable as they are scaling down their service in the area,” she said.
Last year it was announced that the service would be scaled down from 34 to 20 vehicles.
Ward 75 councillor Joan Woodman said she is working with various stakeholders to bring much-needed medical services to Mitchell’s Plain.
According to the Provincial Health Department’s website World Down Syndrome Day is celebrated on the 21st day of the third month every year to signify the “uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.
In a bid to help people living with Down syndrome gain employment within the work sector the NPO Brownies and Downies launched a restaurant in the city centre last year to conscientise the public and create employment and training opportunities for individuals with Down syndrome.
Facts about Down syndrome
People with Down syndrome have mild to moderate intellectual impairment.
The cause of Down syndrome is not related to age, race, religion or socio-economic situations.
It is estimated that one in 1 000 babies born in developed countries and one in 650 babies born in developing countries are affected by Down syndrome.
Eight percent of children affected by Down syndrome are born from mothers under the age of 35, although women over the age of 35 are at a higher risk of having a child with Down syndrome.
Children with Down syndrome can be included in regular schools with regular academic procedures.
Although Down syndrome cannot be cured, people with this condition thrive from loving homes, appropriate medical care, early intervention, as well as educational and vocational services.
Due to advanced medical care, the majority of people born with Down syndrome have a life expectancy of approximately 55 years.
Information sourced from https://www.westerncape.gov.za/general-publication/world-down-syndrome-day-2016