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Kevin van Eeden – Optic Nerve Atrophy, Spastic Quadriplegic Cerebral Palsy

Fundraising for Kevin van Eeden – Optic Nerve Atrophy, Spastic Quadriplegic Cerebral Palsy

Kevin`s story:

Kevin van Eeden was born on the 10th of April 2006 at 30 weeks, weighing a mere 1.5kg at birth. After 28 days in Neonatal ICU at the hospital where he was born, he was discharged with a clean medical record and weighing 1.9kg. At almost 5 months, mom Marlene, began to suspect that there was something wrong with his eyes as he wasn`t focusing on anything. After many doctors` visits and tests, they confirmed that Kevin has Optic Nerve Atrophy (ONA) and are therefore completely blind. ONA means that the nerve of both eyes connecting them to the brain has not developed and so there is no communication between the eyes and the brain.

Mom and Dad sold everything and moved to Cape Town to try to give Kevin a better chance of a normal life. They managed to get him in at the Red Cross Children’s Hospital and after further tests they were shocked to learn that Kevin also has severe brain damage (presumably due to complications at birth). Kevin’s condition is called Spastic Quadriplegic Cerebral Palsy.

The costs in Cape Town were just too expensive to get a suitable school daycare for Kevin, and because his parents didn’t have medical there either, they were forced to return to Lichtenburg. They both got jobs again but mom’s medical aid still does not cover everything that Kevin needs, such as therapy, special equipment and nappies etc. He is on 2 types of chronic medication for seizures and also on medication for chronic constipation (Pegicol), but it is not chronically covered and is deducted from medical day to day benefits each month. His nappies, wipes and other needs such as extra nutritional supplements like Pediasure and other supplements are also not covered by medical. Because they are on a Saver Medical Aid they simply can’t afford to take Kevin for therapy on a regular basis.

They had to hire a nanny to take care of Kevin during the day when both parents are at work. The nanny’s salary also costs a fair amount each month.

Kevin is a very loving and cheerful boy despite all the setbacks and trials he has to go through every day. He must wear nappies and has to be fed soft food. Chances of choking are very high as he cannot control his breath or chew like others do. He needs to sleep between mom and dad on their bed because he can choke, or have a seizure in his sleep. He also has to be turned regularly to prevent bed sores.

Update March 2022: Kevin is turning 16 years old in April and not much has changed with regards to his needs. He still needs to eat soft foods and can only eat whilst lying down. He cannot swallow when he sits, and this makes his chances of choking and aspiring so much more. He also requires lots of extra nutrition as he can only eat certain foods. He doesn`t get a lot of meat and protein in his diet because he cannot chew and does not like the taste of blended meat. Kevin can`t eat any foods that cause gas as this triggers his seizures. He is on meds for constipation as well. He still gets seizures and he is on 2 types of chronic medication for it. He also takes Risperdal at night to help him calm down and helps with sleep as his brain sometimes just doesn’t shut down. He has severe scoliosis in his back, and his hips are both dislocated which makes his pain very intense at times, together with the spasms in his muscles. He has contractures in his arms and legs which makes it even more difficult to move them. He is on adult size medium nappies now.

They had to downgrade their medical aid also as the medical aid premium was more than mom`s salary now as she had to change to a new job because of the 12hr shifts (day and night) she was working at her previous job. She took a huge cut in salary but at least the working hours are better and she has more time with Kevin. Dad is working extra overtime hours to try and compensate for the extra costs needed.

Besides all the challenges he faces, Kevin is still such a happy joyful child who wants nothing more than love and attention.

Because Kevin is now becoming a big boy, and won’t be able to sleep between his parents forever, they are thinking of purchasing something like an electronic hospital bed to make it easier to deal with his needs. Mom can hardly pick him up and carry him around anymore. He also needs a special needs bath chair to facilitate bath time, especially if one of his parents are not there. An electric hoist will also make life a lot easier for him and his parents because he gets taller and heavier by the day, and it`s becoming increasingly difficult to get him in and out of the bath, and from the bed to his special needs buggy.

Supporting our fundraising initiative is a great way to get involved and make a significant difference in Kevin`s life. All proceeds from his “Anchored in Faith” Bracelets are donated towards his ongoing medical care and expenses. Together we can change his world, one bracelet at a time!

Alternatively, please consider a donation; any and all donations welcome. REF: Kevin van Eeden.

Follow Help for Kevin on Facebook for live updates on his progress and journey.

Fundraising for Kevin Jacques van Eeden

Anchored in Faith Bracelets

Anchored in Faith Bracelets for Kevin; consisting of white and teal wooden beads with crystal, silver and diamante fillers.

Charm options: Anchor / Infinity / Hope-Awareness Ribbon & small Cross.

To place an order, contact the agent in your area or shop online.

Anchored in Faith Bracelets © Arms of Mercy NPC
Anchored in Faith Bracelets

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