Hope for Justin
There is a 98% chance that a boy with cerebral palsy will improve thanks to groundbreaking treatment he is currently receiving overseas.
23 June 2019 | People
Justin Koch, a ten-year-old boy from Walvis Bay, has been battling with cerebral palsy spastic diplegia all his life.
Born at 29 weeks and due to the lack of oxygen to his brain, Justin was left with a permanent disability.
His mother, Kim, says that they look at Justin's daily struggles and challenges as a means to motivate and inspire others. “We try our best to give him as much of a normal life as possible.”
Justin and his mother are currently in Mumbai, India, for a life-changing treatment.
“Stem cell treatment uses Justin's own cells and is completely safe. Better still, there is a 98% chance that Justin will improve with this treatment,” mom Kim says.
The treatment requires that Justin be hospitalised for seven days while in India, whereafter he will receive four hours of therapy per day, six days a week over a period of six months.
“The specialised therapy programme is designed to stimulate cells which will assist in them multiplying while repairing brain damage. The second session is in December and together with the necessary scans, it will be able to clearly indicate the improvements,” Kim says.
According to his mother, Justin is responding well to treatment and the family may already be able to see results in four to six months from now. “We have to commit to the daily therapy he needs, though. It's no use spending all this money and we don't put the effort in,” Kim says. “The cells won't multiply and repair damage if they are not stimulated. We will be back every six months for as long as necessary, but only time will tell.”
Kim says that they have been patient for ten years, so any small improvements are a huge blessing to them. At the moment Justin has to lie on his back unless he is eating or drinking.
“The doctors have doubled his dose of Epilim (which treats seizures), since a side effect of the stem cell therapy can be seizures. But we know God is in control, so we trust that this won't happen. In three months, we will go back to the normal dose.”
Despite his good prognosis, the expenses are another challenge for this family. “We have to be back in India in December. It costs about N$250 000 for the first session, which covers our flights accommodation and stem cell treatments. Every session thereafter costs roughly N$150 000. Any assistance will be greatly appreciated. A price cannot be put onto a life changing opportunity at a more independent life for Justin,” Kim says.
Every day a challenge
Justin was diagnosed with cerebral palsy spastic diaplegia in 2010 when he was only 18 months old. Thereafter he received numerous operations as well as treatment to assist with the challenges that come with cerebral palsy.
“His first operation was on his eye when he was two. I had to sell my car to cover the costs, since we did not have medical aid. Then, when Justin was four, we relocated from South Africa to Walvis Bay hoping to provide a better future for him. We were simply not coping financially in South Africa and could not attend to his medical needs,” Kim says.
Once here, she reached out to the community of Walvis Bay in the hopes of establishing a support group for parents with children that have special needs. “And the response was phenomenal! This prompted me to open JJ's Care Centre. We started with 14 children and today we have grown to 150 students,” Kim says.
In addition, Justin is now brother to Jessie, who was born in perfect health in 2017.
“The first three months after Jessie was born were difficult, as Justin didn't understand why he didn't have all my attention any longer and why there was a baby in my arms. We continuously explained and taught him about his sister and now they are inseparable. Jessie is so understanding of her older brother. She is always wiping his mouth with his face cloth as he still drools due to low muscle tone. She will often give him his bottle to drink. They do have their fights, but we are always there to help. It's amazing how at such a young age, she already understands that he is different yet loves him unconditionally.”
In 2018, Justin suffered immense pain and discomfort after receiving Botox treatment to help with the spasms in his legs. “It was a nightmare. The whole procedure was not professionally or correctly communicated to us. We were told that the process is simple and that the Botox would be injected into his legs; this would loosen the muscles, albeit temporarily.
“After the procedure, Justin was in leg casts, which we were not told of beforehand. His feet had been bent forward all his life, and now all of a sudden they were forced into a 90 degree angle with casts. He was in tremendous pain after the procedure. There was nothing more heartbreaking and unsettling as seeing him in such pain, which he couldn't communicate to me. We were helpless watching him suffers. While we removed the casts, unfortunately I cannot turn back time to take away his pain and suffering.”
Justin's greatest passion is music. “He cannot read or write, but he has a brilliant memory especially when it comes to music, naming musicians and recognising songs by hearing the first beat or lyrics,” Kim says.
She adds that he has learnt so much through and with the help of music. “Another passion is motorbikes and quad bikes – so typical of any boy. Our house seems to be a permanent musical theatre with engines revving, but there is absolutely nothing we want to change about it.”
“Another favourite is parliament, South African parliament of all things. He can name most of the EFF, ANC and DA members. He knows the presidents and can recite most of the terminology used in parliament. “For the life of me, I don't know why he loves it so much, but he does. He seems to love anything live and dramatic. Sports as well. When the whistle blows, you can see the excitement on his face, especially when the commentary gets tense.”
Ups and downs
There have been many ups and downs, but Kim says they love Justin just as he is.
“He has his own special personality and there is nothing we wouldn't do for him to enhance his future and to help him become more independent
“One thing we will always appreciate is the fact that Justin loves God. Before he could understand most things in the world, the stories of Jesus and other Bible stories would always intrigue him.
“He often says 'God will heal me. I will walk in Jesus' name'.
“Justin doesn't realise it yet, but we believe he will be his own walking testimony.
“I have high hopes and know in my heart one day he'll stand at my side, hand in hand, feeling the grass and sand beneath his feet and he'll whisper in my ear, 'let's run, mommy'.”