Since the day their son was born, Pam* and John* knew Jethro* would not grow up like other children.
Jethro has Chromosome 3p- syndrome, a very rare genetic disorder affecting the development of the brain, palate, bowel and limbs.
"We found out when he was born," his mom Pam told Parent24, recalling how Jethro was "immediately taken to Red Cross Children's Hospital to have several operations including a stoma."
By his third month, Jethro had a medical problem list bigger than he was.
Pam admits that initially, it was hard accepting Jethro's condition because it caused her baby so much suffering.
This soon changed as the family realised that instead of a 'normal' baby, Jethro was a miracle baby.
"I was very sad because I wanted him to be healthy like other babies. But I still loved him the way he was."
'A rollercoaster of emotions'
"Caring for a special needs child is a rollercoaster of emotions," explains Dr Lyndal Gibbs, Red Cross Hospital's only Paediatric Palliative Care doctor.
Dr Gibbs' position is funded by Paedspal, a local NPO providing free palliative care to children like Jethro who face life-threatening illnesses.
The NGO also provides mental health support for families who care for children with special needs.
"Paedspal are such special people to us because they help us manage our baby. They come to the wards when he is sick in hospital and make sure that we have a plan for him to be comfortable," says Pam.
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A thriving, playful and incredibly loving boy
Due to his condition and the many procedures Jethro has undergone, Pam and John thought they would only have their son "for a little while."
Today, Jethro is just over a year old, and Pam says her miracle baby has blossomed into a thriving, playful and incredibly loving boy.
Despite having a long medical journey ahead, with several surgeries needed in the next few years, his parents remain determined to make the best of every day.
'Under these circumstances, it is almost impossible for a parent to work'
In addition to supporting Jethro's medical journey, Paedspal also provides for the family's emotional and mental health needs through counselling.
"Families face so many challenges," Dr Gibbs tells us, the biggest hurdle being "maintaining a livelihood while caring for a child with special needs."
Something that lockdown and the Covid-19 pandemic has complicated even further.
Pam says that since lockdown began, her husband has been unable to work.
"We have no income, and things have been very hard."
Thankfully, Paedspal was able to assist the family through this tough time, providing emergency food parcels and electricity, which in their household is more than a basic need.
"When we ran out [of electricity], we could not operate my son's oxygen machine," Pam explains.
Yet, despite the many difficulties her family faces in staying afloat while raising Jethro, Pam says she remains hopeful.
"We pray a lot, and I believe that God will make sure that he grows up to be a beautiful boy."
To access Paedspal's services, parents can contact Paedspal on (021) 200 5873.
To learn more about Paedspal visit: Paedspal.org.za
*Names have been changed.
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