Personal message

Hi All

My name is Madie Ray Booysen wife to Adriaan-Jack Booysen a devoted, loving, motivating and supportive step- father of 3; and an amazing, husband and best friend.

Adriaan-Jack aka Adrian was born with a physical disability called Arthrogryposis also called Arthrogryposis multiplex congenita. What is arthrogryposis? Arthrogryposis, also called arthrogryposis multiplex congenita (AMC), is a term used to describe a variety of conditions involving multiple joint contractures (or stiffness). A contracture is a condition where the range of motion of a joint is limited.

Since birth doctors never had much hope that he will ever walk and be able to have a decent quality of life. His parents were told to just accept what his medical condition and that he will never live like any normal person growing up from infant, toddler, teenager, and adult. They could not really give much feedback on what or how or where to from there, however they attempted to operate (with the idea to fix what they can) on his feet, legs, thigh and the biggest one of all was the spinal surgery at the age of 12 years old.

Since the age of 12 years old Adriaan has learned to walk, sit, and do a lot of things which we all thought was above and beyond what he and his parents was told he would ever do. That means he got is education, he participates in various sports and exceeded in 2 of them which was Swimming and Table Tennis. He pursues table tennis after we got married and he reached the goal in the year 2019/20 of being SA Regional Para Table Tennis Champion in 2 categories. He is Gold and Silver Medallist.

The year 2020 came with so many challenges and many changes which we both did not see coming. I lost my job during the time of Covid 19 and currently still unemployed. Losing that income had a massive impact on our household. Adriaan’s health deteriorating so fast and had to give up a lot of things which he loved and have a passion for. Table Tennis was just one of many, besides all his family activities and some of his responsibilities, his health challenged him personally, and marriage. He can’t walk much due to suffering from serve joint and nerve pain, which excluded him from many things we did as a couple and family. Groote Schuur Hospital has become our monthly “visiting/hangout place” After many hospital appointments with specialist and orthopaedic surgeons, many tests, x-rays, and scans were done to determine what they can do to bring some relieve to his suffering of his pain. After 2 years of intense testing, reviewing, Doctors, surgeons, and specialists’ meetings they have concluded and find that they will not be able to proceed with any major operations as it is VERY HIGH RISK AND FATAL.  

That brings me to the WHY!!

Due to all of what you already have read and now know, the reason behind all of this is to make quality of life for Adriaan much better then what I can offer my husband. My focus is on a lot of things to help and make life little easier and comfortable. He doesn’t sleep well, and our bed is not as supportive for someone in his current condition (a good night’s rest is what he long for). A new Bed which is orthopedic to support his body is such a need to offer a good night’s rest and minimal discomfort. Adriaan’s mobility is going down rapidly and very fast. He can hardly walk with his crutches and almost never leave home anymore. My husband is losing his independency, and I can see what it does to him not be able to do things for himself or even moving around. I made some enquiries for an Automatic (Electric Wheelchairs) and its very expensive, He also needs alot of other medical stuff and treatment because we don't have medical aid to get proper treament and health care. We are not able to afford all of this without any help and support. I love my husband and he means the world to me and our kids.

If you have any questions, feel free to contact me or us.

Your sincerely

Mrs Madie Booysen

 

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