It’s a pleasure to introduce myself, my name is Michelle Norman I’m a wife and mother and hold a qualification in Human Resources management but have a high administrative function. Not only that, I’ve also had the pleasure of mothering two very special needs children. In 2014 I gave birth to a beautiful little boy named Jesse Judah and he was born with infantile Osteopetrosis, a life-threatening condition which I had never heard of and had no idea what it even meant or what to expect. I knew that he would live a very short life and that we should expect the worst. I was later introduced to Dr Julia Ambler for palliative care and pain management. I had no idea there was such a level of care in the public health sector and I had no idea that I needed that level of care. Dr Ambler had made contact with me after learning about my story via another family she was attending to in the community. We had fallen through the health care system cracks and Jesse didn’t receive the treatment and support he required, and he passed away in 2017. I had kept in contact with Dr Ambler after his passing and later in 2020 I was expecting my 3rd child, and she was a gorgeous little girl who we named Gia Hope. At 4 months I had discovered she too had Osteopetrosis, and this nightmare had started all over again. I contacted Dr Ambler and informed her of Gia’s diagnosis and she, with open arms directed me in the direction of seeking correct medical care in the State health care system via RK Khan hospital and later we met at Inkosi Albert Luthuli Hospital. I have since learned that palliative care is a support ministry for parents and families who deal with children with life-threatening illness and terminal illnesses. You can fully appreciate the help and support from the Umduduzi team when you’re the parent of a sick child with limited resources and information regarding your child’s diagnosis and prognosis. Their care and compassion goes beyond the doors of a hospital or ward. They do home visits and they make it possible for families who are without resources to receive a basic level of care. What may be termed as “basic” to you but to us as parents of children with special needs that’s huge and absolutely important. My major problem with my sick children is that they didn’t sleep well due to being in pain. That would impact me as an individual who was required to work and function as a normal individual on a day-to-day basis to provide for my family. Dr Ambler stepped in and helped with pain management for my kids, and she solved a small portion of my problems, being sleep deprivation. It made daily living bearable even in the most uncomfortable and restricting moments of watching your child’s health deteriorate while you are feeling completely helpless, the team steps in to provide emotional support, spiritual guidance and a level of care that is beyond the scope of medicine. Compassion, love and dignity are an integral part of Umduduzi Hospice Care for Children. It’s seen on the faces of the staff, and it shows in the work they do. Children with special needs are often overlooked and left at the bottom of the barrel of care. Umduduzi made it their mission to make an impact and change this narrative and are making sure parents like me and children like mine are treated and cared for beyond the hospital wards and to remind us that we too are part of a society that makes an impact on our community and to the world.
Phone : 0728298384
Email : info@umduduzi.co.za