Parents
Sunera James

Profession:
Customer service rep

Age of parents:
29

Child’s name:
Shiloh

Age: nearly 4 years

Is this your only child?
Yes.

Diagnosis of child:
Shiloh was born premature, at 32 weeks. She stayed in hospital for 2 months. She had been out of hospital for just a week and she contracted an infection which lead to Meningitis.  Around six months she started to have seizures -  Shiloh was diagnosed with Spastic Quadriplegic Cerebral Palsy. She is now on chronic medication for seizures and regularly receives Botox injections to manage her spasticity.

What are the biggest challenges facing your child on a daily basis?
The biggest challenges for her at this point is not being able to communicate and she has extremely limited movement which affects her daily way of life. She also has difficulty eating, she can sometimes take up to 2-3 hours to eat one meal. We have to be very careful as she gets a recurring Broncho pneumonia which sometimes lands her in hospital.

What are the happiest moments you have with your child on a daily basis?
When she gives me a smile. Makes sounds and just that moment when she realises that I’m near her and she shows me that she knows.

Are you married?
Committed relationship with Shiloh’s dad.

Has your special needs child had an effect on your marriage?
Yes, in the beginning it was a difficult adjustment - we were both in shock and didn’t know how  to communicate to each other the pain that we were feeling. We were dealing with the stress of medical bills and doctors. Ultimately though, Shiloh’s condition has brought us closer together. We are a team and God decided to bless both of us with this little angel.

Are your family and friends supportive?
We  have a very supportive family and extended family, however they are all in Durban. They still offer us support over the phone, email and visit us regularly. Few of our friends are supportive and involved. Situations like these tend to show you who your real friends are.

What has your child taught you about yourself, both positively and negatively?
Positively: I’m more capable than I thought possible. I never thought I could love someone as much as I love Shiloh. Shiloh has also taught me to be patient and to be happy with what I have. She wakes up every morning smiling despite her severe challenges, it reminds me not to complain when I see her positive way in the world.

Do you take time out, if so what do you do to relax?
Don’t have much time available, occasionally we go on a date night or a braai. We need the time to catch up, laugh, reflect.

What has made the biggest difference to your child’s quality of life?
Her nanny Fiona. Since we employed Fiona, Shiloh has become very vocal and is much healthier. She is able to communicate making little sounds, Fiona also does therapy with Shiloh during the day which helps her a lot. We are waiting on Shiloh’s feed tube and know that this will make a huge difference.

What is your dream for your child?
I wish to see her playing with another child, that one day she will speak and move freely.