When Ishrat Casker was born with Osteogenesis Imperfecta (OI) or brittle bones, the doctor said she wouldn’t make it but this little fighter didn’t give up and 12 years later, despite beingwheelchair-bound,the young girl lives a normal life with her family in Pelican Heights.
In order to gain more knowledge about her daughter’s condition, Ishrat’s mother, Rageema Livingstone, started her own NPO called Brittle Bones SA, five years ago.
Ms Livingstone, an associate member of the Osteogenesis Imperfecta Federation Europe (OIFE) as well as a member of OI Africa said the OIFE assists people with OI in African countries to set up their own non-profit organisations, and that’s how she started Brittle Bones.
Due to the expense of caring for OI patients, Ms Livingstone got involved in helping other families by appealing to the community and businesses to assist in their fund-raising so that they may help improve the” quality of life for OI and special needs patients”.
Ms Livingstone said one of the ways businesses can assist is by supporting a “Blue jeans for OI Genes” drive. “This month – May-is dedicated to OI awareness and on May 6, we will be celebrating Wishbone Day which is a day celebrated around the world to raise awareness on OI (brittle bones).”
When Ishrat was born, Ms Livingstone, was only 22 years old, and her life was turned upside down because she and her husband at the time did not know anything about OI. However, she said, if they had been alerted to this condition, during her pregnancy, Ishrat’s broken bones could have been prevented.
Despite being devastated, Ms Livingstone did not give up and she made an effort to find out more about OI. “Ishrat was born with both legs fractured as well as all her ribs due to handling and her arm was dislocated. She was immediately sent to the NICU (Neonatal, Intensive Care Unit) and diagnosed with Type 2 OI, which is normally fatal. I was told my child would not live to leave the hospital and that we should prepare for the worst. Being a new mother at 22 this was of course devastating. A day later, one of the orthopaedic surgeons from the Red Cross Hospital came to see her and had her transferred to Red Cross.
“She was re-diagnosed as Type 1 which is the mildest form and we have been attending clinics there ever since. During the years she was diagnosed as Type 3 which is severe deformities as she has a barrel chest as well as severe scoliosis (spinal curvature). This combined causes her one lung to be squashed and makes her breathing laboured or faster than usual, which makes her tired easily and quicker than normal.”
Ms Livingstone said Ishrat was a tiny baby and also had very weak muscle tone.
“She required extra assistance at school in the form of a facilitator to help her move around and carry her books etc. Despite all these challenges she is a very bright student and excelled in academics.”
Ms Livingstone said all these challenges had forced her into being a stay-at-home mom from the time Ishrat was 3 years old.
“I can relate to the struggles most moms face with the costs in caring for a special needs child. This also led me to starting firstly our support group, Unbreakable Spirits, five years ago as not everyone has the amazing support system that I have in my family and close friends. My main aim is that if I can prevent just one mom from going through much of the trauma that I faced by educating and raising awareness it will be all worth it.”
She said through the organisation they have found parents or moms who can’t afford to send their children to school and some even did not have enough to feed themselves as they were forced to stay at home.
“There is also the challenge of both mom and child having OI and both had broken bones at the same time. It becomes very difficult for the parent to care for the child and themselves,” said Ms Livingstone.
When searching online to find out more about OI, Ms Livingstone only found links to American sites.
“I feel that we should be able to have support and treatment and facilities in our own country. This has resulted in the NPO being the only registered NPO for OI in South Africa and one of only three on the entire continent.”
Ms Livingstone said: “We aim to provide medical equipment such as wheelchairs, walkers, splints and braces as well as cover medical costs where possible. We assist members and their families through support groups to help them with the emotional aspect that comes with having a rare disease as currently there is no cure for OI.
“We are also running a nappy drive – a fund-raiser, as the costs of having a child on nappies for life or even extended periods can be very expensive. We have partnered with a nappy distributor to get nappies at a discounted price so we can assist families not only with OI but all special needs that require nappies,” said Ms Livingstone.
For more information, contact Ms Livingstone on WhatsApp 061 242 6255 or email firstname.lastname@example.org