Angelique needs desperate help please!!
From a sisters point of view. Thank you for taking the time to read this. I have a little sister with a rare disability. It's a syndrome that has several disabilities not just one. She was diagnosed with it soon after she was born. By the time she was one years old she already had 15 spinal taps. She was the only person in our city diagnosed with this so they wanted to do numerous tests to learn more about it. It was painful for my mother to see them hurt her over and over before she was even a month old , but she had no choice.. they couldnt help her if they didn't know anything about her syndrome. I was sixteen at the time and only saw my little sister twice in the first year of her life. My mother basically lived at the hospital with my sister. They said that she wouldn't be able to walk at all. She would be in a wheelchair for her entire life among other things too. She had holes in her heart she didn't have the bending joint in her thumb , which means she cannot hold a pencil with her right hand , she had to teach herself to write with her left hand. Her rib cage wasnt fully formed , one rib was only half way grown it was shorter then the rest and her spine was growing to the side. As she started growing older her spine rapidly went sideways and the shorter rib .. could puncture a hole into her lungs with any hard knock or fall she could have. She could never do the things normal kids could , because her spine was growing to the side it was compressing her lungs , which meant her lungs stayed small , it did not grow the way it should have. The same with her heart, but against all odds she was walking at the age of 10 months. She proved them all wrong. She was stronger than this disability. When her first surgery finally came she needed a MAGJEK rod to be able to keep living. Without it the doctors said they could just send her home to die. The only problem was it was a lot of money and we didn't know if the government would give it to her because no other person ever got it for free because in spinal surgeries here , it's more like a luxurious option. There are cheaper options and why would they give her such an expensive one... even if she needed it to survive. The doctors made they're case and we were ecstatic to find out it was approved. She was the first person to be granted this rod to help her straighten her spine abit so she can have the space around her lungs and heart needed. The day of the operation came and we were all fearful because we all knew there was a more then normal chance she wouldn't make it out of the surgery. Since her lungs was so weak at this stage they didn't know if she would be able to handle the anesthesia for so long. Time passed in the waiting room and we were all crying , she took four hours longer then the given time. They finally let us know the operation was a success. We all felt relieved but then the healing period came. She was in the hospital for more then a month after that and it was a nightmare. The hospital staff barely cared for the patients and pain the children was in. My mother constantly had to tell and beg the nurses for the medication prescribed to her. If she didn't receive it hours after the time given she wouldn't receive it at all. One night the nurse that was on night shift took the keys for the locker that kept the medication home with her. All the kids had to stay without any medication till that spesific nurse came back in shift. All the children there had back operations .. it was painful to see them all in so much pain but helpless to help them. It broke our hearts. My mother was furious and took it further and in the end the named nurse did lose her job. My mother felt guilty and it bothered her that this happened .. but in the end the nurse didn't even care that she left so much children in pain. It was a very rough time for us all , my mother could not work for that entire period and in the end the company she worked for also closed down. She could not afford the rent of her little place anymore , neither food or traveling up and down from home to hospital to get abit of sleep and eat etc. We all tried to help as much as we could and I saw a family reunite like never before to help. Cousins , uncles and aunt's .. everyone. They held a small fund raiser at a local bar for her. It got the rent paid for two months and the needed food etc. We felt extremely relieved even though it barely just covered most of the things needed. There was still a lot of struggling but we all made it through in the end. Over time her back started straightening more. It was still a painful process for her because she had to go back every few weeks for them to straighten her back with the machines. At the time the MAGJEK rod seemed like a miracle granted to us. She was so much taller then before !! We could finally cut her hair in a normal way without having to accommodate for her back too much! , every one was so happy. Until one day she felt extremely tired and took a nap. When she rised up off the bed she felt a snap in her neck and her legs began to feel numb and she barely felt she could walk. They took her to the hospital and revealed that the rod broke. At this point only two pieces of tape held the rod in place. The earliest date they could get for her next operation to remove the rod was in September. It was still months away. Which meant she had to walk around with this broken rod that could break entirely at any moment .. for months. Her little muscles had to support everything and they wernt used to it. She started suffering more and more over the months with pain and even through all that pain she never really wanted any medication for it. She tried to stay as strong as she could and not let her body get used to pain medications for when the real pain comes the medication would work properly , she is such a brave girl and we would just pray that it didn't break entirely before the operation. If it did .. it would likely be all over for her. It has been an emotional rollercoaster for us all. With death staring her in the face over and over but what really inspires me , she never gave up once. Even when the doctor told my mother that it wasnt a miracle she is alive it was just a rod. If she didn't get the rod they would have sent her home to die. For a young girl of 12 to hear a doctor say that to her mother in front of her ...she had nightmares...she was so scared she was gonna die at any given moment... but she is staying strong and she loves school so much. She is the one to wake everyone up at 6 am and she leaves the house while.everyone is still sleeping to go to school. She hates missing exams for her operation and said she wished the date could be moved just so she could write her exams herself. She does excellent in all her subjects and absolutely adores all her teachers. For a kid to love something so much and not being able to enjoy it because of her health breaks my heart. The operation is on the 12th of September. At the moment we are all trying to save money to help with the rent for the little flat they live in since my mother would have to give her constant care, She would have to stay at the hospital 24/7 to make sure she gets the medication she needs , also constantly turn her from side to side so her body doesn't ache too much since she wouldn't be able to turn herself. Wash her so she wouldn't get any bed sores. It's going to be another tough time for this little angel but I know with God by her side she will find the strength to prevail. The local bar that held the small fundraiser closed down since her last operation and we have tried reaching out to radio stations and made a Facebook page for help etc but no help so far. So here I am. We need help. We cannot do this on our own. My mother feels so bad to ask anyone she never felt like she needed anyone's help and she wants to be a mother that can see to all my sisters needs on her own but even she realized it's not a possibility for us. We need to pay the rent and survive through the recovery period. Even when my little sister is out of hospital she is still going to need someone there with her at home. I myself work but It's not enough to help them the way they need me. I have made arrangements at work to have more off days in September so I can swap with my mother so she can go home and rest and eat every few days but I also need to try and not take off too much to try and get enough money to survive. We desperately need help. Just enough to survive. Please. I'll upload photos of her and her X- rays. The one's we were allowed to get. The hospital never wanted to give us much. Since her disability is so rare. I don't know why. If they wanted to maybe keep it for themselves so other people or doctors don't get involved or if it was to cover something up. I cannot say. All I know is what we have was a few years of struggle to get. I will also post as much information about the disability as possible and my mothers own post I'll copy at the bottom of this one. I'll give updates as soon as the operation is done. If you're still reading this.. I really appreciate the time you spent to listen to our story .. may God bless you. Thank you to everyone for the help in advance.
My mother's post of Facebook. The Facebook page is called Angelique Spinal Fusion ( it's the next operation she has to go for in September. There are also some banking details there. My mother's own bank account , I created this page on GoGetFunding for PayPal users and for some extra help. Since I'm not sure anyone will actually see her page on Facebook and I don't think we could get far with help on there. Since it's a south African bank account and not much publicity. )
Here is my mother's own post if you are interested to read it or you can go to the Facebook page. It is a more detailed medical explanation of what exactly is wrong with her. I just shared my opinions. You can also contact me on 061 773 2644 can also be added to whatsapp or telegram. Country code +27 the same goes for my mother's number at the bottom. My email [email protected]
Angelique was born with multiple malformations of which congenital scoliosis is only one. She was diagnosed with a rare syndrome called V.A.C.T.R.E.L. association which is a acronym for multiple anomalies. This included deformations of the Vertebrae, Anorectal, Cardiac,Tragia,Renal, Esophageal and Limbs as well as deformations of the Ribs. She also suffers of Demunitive ressesive lung decease. Of the 3 holes in her heart 1 remained and her kidneys are situated in her icca fosil (behind the bladder) She also has De Quervains desease in her hands. She was seen at Tygerberg since birth as I was a single mom after my husbands suicide and could definitely not afford the medical bills. At the age of 10 her malformation became a life threatning reality when she developed thoracic insufficiency and her lungs and heart were being crushed by her spine. Drs said it to be the worst malformation seen and decided to risk the fact that her lungs might not be able to handle the aneastetics but without this surgery she would be sent home to die. I had to make the biggest decision of my life. Operate and lose her on the table or lose her later..We opted for the MAGJEC rod. A magnetic hydraulic system that would be adjusted as she grew with a electromagnetic field allowing her more growth without more surgery. This was the first of its kind in the public sector. This was done on the 18 th of January 2018 when she was eleven. Unfortunately the rod broke only a few months later (she is now 12) and now has to come out. It was decided to do the fusion but because Tygerburg is a public facility date could only be set for September and unfortunately she turns 13 in August and would now be treated as a adult. We dont have the means of paying for a private hospital as I now stay at home to be able to give her constant care. We now have no alternative as to seek financial aid through donations or any other means to raise the funds required. If the response is good enough we might even be able to get her into a private hospital but the time is little as for the risk of her having a broken inplant.
It is a very big operation as it would be nearly her whole thoracic cage that would need fusion.
Please help me keep my promise to my daughter. I know only God could keep such a promise. But what do you do when your child is scared to die. You make that promise.
All Queries can be sent to Mrs Du Rand ( Mother)
Julene Sharon Du Rand
Emails to: [email protected]
Tel: 074 887 5762
Please feel free to contact me .
Thank- you sincerely.