Owner, Centre Manager of Amaani and Friends special needs centre
Age of parents:
Age: Born 27 November 2010 (She would be 10 years old this year, sadly she passed away when she was 8 years old)
Is this your only child? Yes
Diagnosis of child:
Cerebral Palsy. Amaani was a non-verbal Spastic Quadriplegic
What are the biggest challenges facing your child on a daily basis?
Carrying children as they get bigger can be difficult. As they get bigger you get older and it makes it quite difficult to move around. The everyday expenses, special diets, nappies, medication, doctors appointments etc.
What are the happiest moments you have with your child on a daily basis
Amaani was a fighter, she carried every illness, every obstacle in her stride with a smile on her face. She was a go getter and she always did her best. A child that never said a word had her way of showing people what she felt and what she wanted.
Are you married?
Married for 12 years.
Has your special needs child had an effect on your marriage?
Not in a negative way. With Amaani we learnt to stand together and overcome every obstacle together. We drew strength from each other.
Are your family and friends supportive?
Yes, very supportive. Amaani touched lives everywhere she went. When people met her, she reminded them that their problems are not that big and her beautiful smile could lift anyones mood.
What has your child taught you about yourself, both positively and negatively?
Amaani taught me patience. She helped me realise all the things we take for granted such as talking, walking, self feeding, making choices. Amaani has taught me that with determination all obstacles can be overcome even when it seems like there's no light at the end of the tunnel, just keep moving forward. Her fighting spirit has left me positive and motivated to help other parents like myself and other children facing many different challenges on a daily basis. She helped me find a side of me I never knew I had. The fighting spirit that she needed.
Do you take time out, if so what do you do to relax?
Honestly,I found it difficult to do. Although there were options to leave her with someone trust worthy, it was not easy for me to do. When I was away from her I would keep worrying about her, if she was ok, are they managing to take care of her. I'm more relaxed when she was with me.
What has made the biggest difference to your child’s quality of life?
Her disability never stopped us from living life. She went on holidays, she met different people, she dressed up, she went out. Alot of things are difficult to do with special needs children because the world is not user friendly but that was never a reason to hold her back. We took her out and she experienced many things. Her life was full. With her getting sick and being hospitalised (often with pneumonia, bronchitis, bronchial pneumonia) we still made her life enjoyable, she ate her favourite foods, especially Lindt chocolate. We dont have any regrets, depsite her disabilities her life was a good.
What is your dream for your child?
All we ever wanted was for Amaani to be happy and healthy, as healthy as possible. We accepted that the damage she suffered was so severe that it would not be possible for her to reach many of her milestones but we never gave up hope and we accepted her limitations. She had many experience for example with her upsee she could walk. As long as she was happy and healthy, that was a daily blessing.
All we ever worry about is our special needs children's future's and what will happen to them when we get older or are no longer able to care for them, so we opened a centre in Aamani's name a place where she could go everyday, with other children and and adluts - there is no age restriction to who can attend. Unfortunately she passed before she had the opportunity to attend the Amaani and Friends Centre, However her legacy lives on and we are now assisting children like Amaani .