Parents
Samantha
Profession:
Stay at home mom at present, to care for Caylum while he is fighting for his life in paed ICU
www.caylum.org.za
Age of parents:
29
Child’s name:
Caylum
Age: 7 months
Is this your only child?
No, an older sister Charlotte, 9.
Diagnosis of child:
Caylum was born on the 12 January 2016 in Johannesburg, and was diagnosed with tracheo-oesophageal fistula (TOF) and oesophageal atresia (OA) and tracheobronchomalacia, a rare condition where the tracheal (windpipe) cartilage is soft
What are the biggest challenges facing your child on a daily basis?
Caylum struggles to breath. He has already had 3 operations to address this, but Caylum requires another complex procedure and there are no doctors in South Africa who can perform this. There is a doctor in America who has pioneered a procedure that will save Caylum’s life. We are desperately trying to raise funds to Get Caylum to Boston.
What are the happiest moments you have with your child on a daily basis?
When Caylum smiles at us, and the moments we have, when he is pipe free, and get to see his gorgeous face.
Are you married? Married
Has your special needs child had an effect on your marriage?
Since Caylum was born, we have been in hospital basically the whole time (he has only been home for 3 weeks in total) and it has put a huge amount of strain on our family. But my husband has been by my side through it all, and the best possible father to Caylum. He has shown me his love knows no limits, and I feel truly blessed to have him by my side while we travel this difficult journey trying to get Caylum the help he needs.
Are your family and friends supportive?
Our family is extremely supportive. We are from Delmas, but Caylum is in Clinton Netcare Hospital in Alberton, so we are renting in Meyersdal to be close to him. My mother and sister are looking after our daughter Charlotte in Delmas, while we are here. Wayne’s mother helps us at the hospital too. We have amazing friends who have offered us lots of support through this journey.
What has your child taught you about yourself, both positively and negatively?
To appreciate the small things, and cherish every moment, and to have faith in the Lord. God has helped guide us through this tough time, and has kept Caylum safe and put the right people on our path to get Caylum to help he needs.
Do you take time out, if so what do you do to relax?
We don’t have much time out at the moment, as I spend all day in ICU with Caylum, but sometimes when he is sleeping I slip out for a quick cup of coffee!
What has made the biggest difference to your child's quality of life?
The staff and doctors at Clinton Netcare Hospital have saved Caylum’s life on numerous occasions. They are the reason he is alive today. They offer him amazing care and are so kind towards him.
What is your dream for your child?
To get Caylum to Boston, for the operation to save his life, so he can live the normal life he deserves, a life outside of ICU (where he has spent most of his short life), a life free from wires and pipes, a life at home, with his mom, dad and big sister. www.caylum.org.za
