This led to him being born with a rare genetic disease.
“He was diagnosed at age 2 with Col4A1; its a gene mutation and it affects the collagen in the body. It can cause eye deformations, kidney deformities and affect the white matter in the brain,” said Lisa.
She added that there were about 50 known cases of the condition in the world, and that not much was known about the condition and more research was being conducted.
Hunter suffers from seizures, almost daily.
“He had a stroke in utero, and this caused severe and global brain damage resulting in cerebral palsy, and intractable epilepsy. He suffers from multiple seizures and other health complications daily and has severe neuropathic and other pain daily.
“He has had multiple interventions and surgeries and is an incredible soul with a real fighting and pure spirit. He has blown us and his doctors away with his ‘never give up’ attitude, and was never even expected to make it this far. He requires around-the-clock care and needs help with every aspect of life.”
Hunter is now 5 and inspires all those around him. Lisa hopes that her son will inspire more people as he is the star of a children’s book she has just finished writing.
The book, titled Little Braveheart, sees Hunter as the main character, a superhero. She said her son inspired her each day and that she wanted to share that with others.
“He has come so far in terms of what the doctors said. I started the book about three years ago. I have always had a love for drawing, nothing serious, but I thought doing a book would help create awareness and hopefully inspire others who are in a similar situation.”
Lisa said she finished the book and illustrations about three weeks ago and was now hoping to get it published.
She added that while there was no cure or treatment for COL4A1, they were doing stem cell treatments and other forms of treatment to manage Hunter’s epilepsy and cerebral palsy.
The family will host a garage sale at their home in Milnerton, to raise funds for Hunter’s next stem cell treatment at the weekend.
Anyone wishing to donate can do so via: FNB Cheque Account. Account Holder: Lisa Hohls. Account Number: 62311342670. Branch code: 250655