Bradley and Phillecia Naicker
Bradley is a Network Administrator
Phillecia is an Estimator in the printing industry
Age of parents:
36 and 29
Age: 23 months
Is this your only child? No. We have one other child who is 2 months old.
Diagnosis of child: Joshua has a rare brain condition called Congenital Hydrocephalus. This condition causes an abnormal buildup of cerebral spinal fluid in the brain, this excess fluid put so much pressure on his brain, causing brain damage. The cause of Hydrocephalus is unknown and there is no cure but it is controlled with a shunt, which drains fluid from his brain to his stomach, he had his first brain operation to insert this shunt at just 10 days old. The conditions he has developed as a result of Hydrocephalus which includes cerebral palsy, cortical visual impairment, chiari malformation, missing septum pellucidum, epilepsy, scoliosis, hip dysplasia, hypertonia and global developmental delay. He has had a total of 6 operations and 10 diagnosed conditions in his short existence.
What are the biggest challenges facing your child on a daily basis?
He cannot see at all, currently, due to the cortical visual impairment - his case is very severe. He cannot perform any tasks independently as yet, he needs a full time caregiver. He has sensory issues and global developmental delay.
What are the happiest moments you have with your child on a daily basis?
We have alot, he is such a happy child despite all his challenges, he loves different sounds and his laugh is contagious. He loves nursery rhymes and has a few favourites, he gets overjoyed when he hears them, before the song even starts playing he just knows it by the tune. He is not a child that cries, but when he does, just reciting his favourite nursery rhyme or a tickle will have him laughing in an instant. He exudes love and happiness and you cannot be anything but happy when you are around him.
I love how he communicates, when he wants his milk and is annoyed that I am taking long, he has such a cute personality. His baby talk is so charming. He just makes me so happy with everything he does. He absolutely loves being praised for anything that he does (rolling, lifting his legs as he is in a cast at the moment, saying a word or what sounds like a word, bearing weight with his hands, activating his core muscles when in a sitting position, holding his head up during tummy time), he gets so excited when we praise and clap for him, he actually waits for it now.
Are you a single parent or married? Married.
Has your special needs child had an effect on your marriage?
Yes, it was difficult on our marriage especially in the beginning. We sometimes took out our frustration on each other. We were the most loving couple before we became parents and something like this really tests your commitment to one another. We survived the most trying time, not only in our marriage but also in our lives. It has made us even stronger than before and deepened our love for each other and our child.
What has your child taught you about yourself, both positively and negatively?
Joshua has thought me to be brave, he has made us realise the amount of strength we never knew existed within us, he has taught us how to fight and never give up, to keep pushing even when things dont look so good. He has taught me what unconditional love is all about.
We went through alot of pain and suffering watching our precious baby go through so much, everything we have been through has made us better people and parents. We are not angry with the world because of this. We choose to put all our time and efforts into researching our childs condition, becoming experts on our child and doing everything in our power to help our child. The only negative would be that we do not get enough sleep as we are always researching his conditions and now spending all our time on raising funds for his treatment, but he is worth it.
Are your family and friends supportive?
Yes we do have certain family and friends that are supportive.
Do you take time out, if so what do you do to relax?
No, we do not have the time for this as we both work full time jobs, when we get home, we give Joshua therapy. Weekends are booked for Joshua’s therapy sessions with his professionals so that they can teach us how to work with him during the week.
What has made the biggest difference to your child’s quality of life?
Therapy. We have seen a major improvement with therapy, he started at 4 months old. He had so many sensory issues and did not even want to be touched but with therapy he has come such a long way, he loves cream being rubbed on his face which we could not do before therapy, he is very close to sitting and crawling now.
What is your dream for your child?
Our only dream is for our baby's good health. We just want him to live a life with far less challenges then he currently faces. We know that he feels the love we have for him, but our wish would be for him to see how our eyes light up with the joy and happiness that the brings to his father and I. We want him to see the happiness he brings to this world as well.