Help Schalk communicate with his family as long as possible – ALS/MND

My brother was diagnosed with the most aggressive form of Motorneuron/Als in September 2015. Many of you have read the posts about our need for assistance in order to help my brother Schalk Willem Van Heerden I wanted to share something with those interested. A little more information why we need help. We have already bought a eyetracker for my brother, and the professor from the University tried to help us, building software that will work for my brothers special needs. Unfortunately the money spend and all the effort was for nothing. He needs specialized equipment because of his eyes, they are very weak and a normal eyetracker cant follow his pupils through his glasses. He has been wearing glasses since he was 9 months old. By the time he was two years old he already had an eye operation. His eyes are really very sensitive. We were very dissapointed when our first plan didnt succeed. As we know my brothers intelligence and it capabilities he already told us about the Tobii, i thought it wasnt necessary thought i knew better... but i was wrong and it was an expensive lesson. We will be donating his eyetracker to someone who needs it and can use it. The Tobii eyetracker with communication system iow program that puts his words into a voice is 11600 euro's. Which is alot of money on top of all the other medical expenses. I have tried everything i can but sometimes you gotta humble yourself and ask the people who care to help. There are friends and family, people who know Schalk his passion for life, his sense of humor, the love for his family... who have wanted to assist and help before. We didnt want to misuse it and said when we really need help we will ask. Sadly our time is running out, Schalk has only 10% movement left in his right arm but not his fingers anymore. I asked him last night do we have at least a month so that when the machine comes he can program it himself etc... he shook his head and he said less... 😢 its a shock everytime we realize how fast he is losing ability in any area of his body. He has one of the most aggresive types and along with the motorneuron he has extreme pain all over his body all of the time. We realize our time we have left is little, but we all live for the moment, and Schalk is our anchor, he is the one who will make jokes, who laughs, smiles and whose head and attitude is so positive. Without his positive spirit i dont know where we wouldve been. In short we as a family really need help to gather the amount for the Tobii.. not because we want the best or not happy with what we have we dont have any other options because of his eye condition. If you feel that you can help us in any way please private message me or go to our Gofundme page. I have shared the link. Apologies for the long letter, but i wanted to explain his situation.. Will be grateful always... 🙏🏻 Suzé Steyl

By clicking on the link below, you can instantly donate any amount. The organization makes sure everything is above board and no one can misuse the money. It can also be anonymous you can choose the setting. Its really easy. No amount is too small as together we can make a difference and help my brother be able to communicate with his family the time he has left. 🙏🏻

gofundme.com/als-help-my-brother-to-live-life

We have a dormant bank account seeing that many struggle with the gofundme page

Please use these banking details if you would like to contribute

Liane Aviation

62682156130

FNB

My brothers wife wrote this open letter, i would like to share it with you:

This is something I dont normally do.. Very difficult for me to show the world what goes on in my heart, my fears, my sadness, my weakness. As I am sure it is for alot of people too. This letter I am going to post now will leave me feeling so exposed and vulnerable but I need to do this for the love of my life Schalk Willem Van Heerden. For our beautiful boys, Phillip and Schalkie. We have no control over the future but can try to make the present as great as possible! Everyone has posted their stories and how they see MND (Motor Neuron Disease), how they cope with it, how they live with it. Please allow me to tell our story...

"LIFE OF A MND WIFE & MOM"

To start off my story I just want to give a little background on how our lives started. Schalk and I met in 2012. We fell deeply in love from the get go. From the first day we knew we were meant to spend the rest of lives together. Or so we thought and hoped. We got married in 2013. Best day of our lives. I got to really marry my prince charming. Every woman's dream. Beautiful wedding, the beginning of a wonderful life. We were so excited! I have finally found 'my person'. In 2014 our youngest boy was born. We already had an older son Phillip. We knew from the get go he would be the best big brother ever! We were blessed with magnificent children!

Schalk always had so many dreams and lucky enough we shared in those dreams. We wanted to make a difference in people's lives. We wanted to help people. We started an ambulance service in Kuruman Northern Cape in 2014. Good emergency medical services was very difficult to find in that specific area. We were very fortunate to get everything up and running very quickly. Unfortunately, our first patient was my dad Fanie Van Rensburg Herinneringsblad. :( He had a very serious heart attack. We transported him to Kimberley and then to Bloemfontein. He died a couple of weeks later on 29 May 2014. Our lives, my life was turned upside down. The one person who knew me best was gone in a blink of an eye. Our youngest was barely 2 months old. He will never get to know how amazing our dad/grandfather was. Our oldest son was very distraught. He completely cut himself off from the world, school and family. My heart kept breaking. How can I help my child if I cant even help myself? Every parent out there wants to protect their children from any form of pain. We want to carry it for them but unfortunately we cant. I really was clueless. I felt powerless. Then one day I was informed that try-outs for rugby is starting. So we 'forced' him to try out and he made the U13A rugby squad! Man we were so proud of him especially his dad Schalk. My dad would have been too. He never missed a practice session or a game when Phillip was playing. We were still worried about our son. And just one day he, out of the blue said "I am playing for Oupa Fanie this year", that is when we knew he will be okay. He had an awesome coach who really helped look after our son emotionally. We will always be grateful to him. I was relieved, all of us were. Phillip made the U13 Griquas team also that same year!! He was thriving! Our lives were getting back to normal. Man, were we wrong...

September 2015 my husband Schalk was diagnosed with Motor Neuron Disease. There are different kinds of MND, and he got diagnosed with the worst kind! That evening after he got the horrible news from the doctor he checked himself out to come and see me at his parents' home. I saw his face and my heart dropped. All I can remember was thinking "please God not him too!" I was so angry! In a way I am still angry. I was angry with him too. I know it was not his fault but I am only human. I am sure many can relate... So much goes through your mind. You cant shut out anything and just think nothing. Its racing the whole time. You just want to think nothing, hear nothing, FEEL nothing. It is human nature to want to protect yourself. Emotional pain is awful and unbearable. Thank goodness the kids were sleeping when we got the news. I was so scared. Wished they can sleep for just one more day or two. Just long enough for me to come to terms with this news. How to tell a son that his father was terminally ill and there is no cure. He wont get better... and this just months after his other hero died! I have never felt so useless in my life. We took the kids to the hospital the next day. Schalk was so emotional. We all were. Our kids are so young still and so much heartache is still awaiting for them for the rest of their childhood. Any mother's first instinct is to ask how to protect her children. I was obsessed with it. How can I protect our kids? 'Lord, help me protect our kids!' It was running through my thoughts the whole time. It never crossed my mind that it was not in my hands. When you are desperate you grasp at straws that are not there. Schalk deteriorated rapidly. Quicker than we thought. We had to step away from our dream in March 2016. This illness has already taken its toll on my husband. It was so hard. I think the worst part of being forced to let this dream go was seeing a little light dying in your husbands eyes. A part of me died too. I think when you love someone so deeply you become one. You feel each others pain and disappointment. But I think that is what marriage is about. That is what loving someone unconditionally is about. And I really wish every person can experience that feeling, that kind of love.

We had to move to Bloemfontein to be closer to his doctors and proper hospitals. I am not going to lie it has been so difficult. I have lost my mind quite a few times as I am sure alot of people would have too. Alot of days I feel useless, powerless. There are days I ask God why I wasnt the one that got sick? He can still make a bigger difference in this world than i ever could. I know I will never get an answer on earth but maybe someday I will. We tried to tick off as much of Schalk's bucket list as possible. We are running against time and unfortunately time is running out quicker than we would want it to. It is so frustrating. All of it. I am Schalk's carer. Arno Jooste helps me out because lets be honest, running the household, taking care of the kids and the house and everything else is ALOT to do even for a super human. I try my best to keep all the balls in the air but sometimes one or more will drop. And it usually freaked me out but not so much anymore. It is okay, everything doesnt need to be perfect all the time! But try telling that to a husband who wants everything perfect. So you can imagine it is hard and very difficult. But I can also imagine how it feels for someone who was always in control to not be so much anymore and that wasnt his choice either. Schalk is totally paralysed in his left arm. He can barely use his right and this week we realised the muscles in his hips are starting to deteriorate too. He has been bound to a wheelchair for almost 4 months now.

Believe me when I say this whole situation make me very p'd off most of the time. I cried so many tears I can fill up an ocean I'm sure. I get irritated with my husband alot and he gets irritated with me also. We try to keep our communication line as open as possible. Marriage is hard to start out with but caring for your partner that is terminally ill makes it alot harder. Emotions are always running high. You are scared all of the time and I am not joking! I am scared all of the time. You feel so much responsible for that person. It is huge. There are no place for any mistakes. Not with medication or medical decisions. It can be overwhelming and sometimes even suffocating. To be honest I sometimes want to run for the hills. I just want to disappear. But then what will become of our kids, of my husband? No one knows their nitty gritty as well as their mother or his wife. So you stay and get up again and hope that tomorrow will be better. I just want to say that it is okay to express how you feel, to say you are p'd off and be p'd off. Dont be ashamed! The universe can be so messed up and we will never be able to understand why. And sometimes we just have to accept it and move on even though we hate it.

Schalk is my best friend. Even though he doesnt understand why I react sometimes the way I do he still tries to. We could talk for hours about anything and everything. Talk about crazy ideas and adventures! Laughing like crazy people! Even though we are connected in such an awesome way that with just a glace at each other, we knew what the other one is thinking. But unfortunately not everyone in our lives are able to. Schalk rarely speaks now. He cant talk over a phone because the person on the other side wont be able to hear him clearly. We talk for him these days. Sometimes even i struggle to understand him. His jaw and facial muscles get tired quickly. We as humans tend to overlook the smaller things of the person you love, like for example the sound of your loved one's voice. Hearing that person saying 'I LOVE YOU' or hearing them laugh with his kids. Reading the words are for sure not the same thing. When someone you love dies everything about that person disappears with them into ground and that is final it is gone. But imagine the silence when they are still here and can't say a word... It breaks my heart everytime the thought crosses my mind. I still need to hear my husband's voice untill he cant anymore untill the end.. Our boys still need to hear their dad say he loves them and is proud of them. He still needs to teach them how to be a man and how to 'woo' a girl... we still need him to tell us it will be okay, we will be okay one day! So I jumped today to tell our story, my story. Schalk's sister Suze Steyl created a gofundme.com page for Schalk. We found a way for him to communicate with us until he is not here anymore. Please, I know life is very hard for everyone at the moment financially. But PLEASE help us give my husband a voice when his disappears permanently because of this monster of a disease. Help us give him as normal of a life as possible. There are so many things being taken from him daily and there is nothing I can do to stop it at all. I am powerless, he is powerless. So please, I dont normally ask people for help, we were always the ones helping others in need without expecting anything in return, but please help us. Help my husband who has the biggest heart I have ever seen, as many can testify to.

Thank you to everyone who has taken to time to read our story. I appologise for it being so long. I didnt plan on it, once I started I couldnt stop. Even if it this doesnt help with the funding i hope it can touch someone's heart and soul or maybe change someone's life to love unconditionally and keep getting up and face life even though you have been knocked down so many times.

Carla van Heerden