For those new to Reanis page....PLEASE could you share Reanis story and ask friends and family to please like her page.... Here is her story and its evolving although I havent updated the latest as yet...still correct and valid to date.... November 2013 TO WHOM IT MAY CONCERN: Re: Reani Badenhorst suffering genetic and metabolic disorders My name is Reani Badenhorst and on 12 June 2013 I had my 1st birthday. I was born with genetic and metabolic disorders causing different kinds of problems. At birth my mom had heart failure and had to be resuscitated. I was left without oxygen for 20 minutes. My 1st days of life were spent in the neonatal ICU. Even though I was without oxygen and black when doctor took me out, Jesus loved me so much he saved me so that Mommy, Daddy and sissy Charné can just hold me and love me. Mommy immediately realized something isnt quite right. After many doctors consultations, I was admitted to hospital at the age of 6 weeks. Tests were done and I was diagnosed with the same stomach and lung problem sissy has then determined to be genetic. My problems however is more than just my stomach and lungs as my little body dont digest and break down proteins and now I must have imported medical formula feeds plus medications to help me feel better and keep pain, cramps and other symptoms controlled. I saw doctor many times until November and was in and out of hospital many times and until 30 April 2013 I was in hospital for a stretch of 18 weeks being the longest stay I had to go through. Since Ive been transferred home to be cared for in my own home hospital room with 4 registered nursing staff, Ive been admitted back to hospital 5 times of which the latest was 30 August 2014. Doctor now treats me mainly at home as the hospital ward is more dangerous for me having a concentration of different viruses and bacterias in the hospital ward. Ive been to theatre 6 times already between January 2013 and October 2013 for different procedures and again in ICU after having my major stomach operation at the age of 8 months. Whats the name of my condition? There are different problems and not only 1 condition. THAT is whats making life SO difficult. The question is rather, what is wrong with my little body? 1. Im Asymptomatic which means that I react and show symptoms, conditions and reactions to conditions differently than the average healthy person. It makes treatment very hard because I look perfectly beautiful and normal from outside, but the test results tells a different story. 2. My body over produce stomach acids spiking through the Nissen operation and burning the bottom part of my esophagus. Drs thinking that I could have the Zollinger-Ellison syndrome as the symptoms/markers for this syndrome are present but cant be 100% confirmed by the Professors at present as Im already being well treated for the acid production which prevents the display of potential peptic ulcers caused by this syndrome . This syndrome cant be cured but the symptoms must and can be very well controlled to prevent potential peptic ulcers in the small intestine from forming and/or bleeding should this indeed be the syndrome present. Without the right medications, regular checkups and strict controls, such ulcers can over time form and can even become cancerous but for now this is not happening as Im receiving medication to control the stomach acid levels. 3. My body doesnt break down or digest proteins; therefore I can only be fed with a special medical formula with limited amino acids. 4. I also have a condition called Food Aversion. I have no problem to stay without feeds for hours on end and youll hear neither complaints nor any crying from me for something to eat or drink. Thats why I need to be fed through a mickey stomach tube. Im connected to the feeding pump for a total of 14 hours in a 24 hour period. During this time I only stay in my cot as this is where my feeding pump is set up so Im in a routine to know now that this is then also time to sleep. This feeding pump uses a feeding bag and line thats used to drip my feeds into my stomach. Eventually I must be rehabilitated for me to learn that food and eating is critical for survival and growth, but this is a very long road lying ahead and will not be something that will be natural for me to do as my brain is not registering that my little body needs feeding. My brain just do not register that my body needs food and has yet again been confirmed on 28 August 2014 after I was left off my feeds for almost 58 hours. My body just started shutting down and left me completely lifeless and unable to react or move in any way. My body started using the muscle tissue as source of energy to keep the basic organs working. If I had been left without feeds for a while longer I surely wouldve died. 5. At the age of 8 months I had my stomach operation. I was in ICU with an epidural for a while because the operation is extremely painful, but Im a little fighter and the operation was a success. 6. I also have chronic Esophagitis of the Esophagus. This means the Esophagus is chronically inflamed and the over production of acid damages the Esophagus regardless of the stomach operation. This is an indication of how strong and how much acid are produced by the stomach. This is painful and makes me feel sick of the acid burning me inside, similar to heartburn or indigestion. 7. In addition to all of these problems and a list of allergies, my body also fights and rejects the biofilm material covering my stomach tube. This causes the stomach to become inflamed quickly and also easily attracts organisms to breed and cause infections quite easily. I receive maintenance antibiotics weekly. The mickey stomach tube must be replaced with a clean one regularly. This is to prevent the biofilm from becoming a breeding ground for micro organisms. Granulation tissue forming under the operation scar and around the stoma opening is burned with a caustic pencil to stop growth and prevent scarring. Where granulation tissue growth is on the inside of the stomach, it has to be removed and cleaned in theatre. 8. Osmotic diarrhea happens mainly after feed loading but needs to be monitored in quantity and frequency to ensure the volume of my feeds and the volume of nappies are balanced to ensure I dont lose weight. A balance that took several months to reach as such imbalance could easily cause me to lose 400gr weight overnight. My stools are abnormal and are mainly watery or slimy. My large and small intestines are directly responsible for this problem. 9. My body does not absorb or digest the nutrients from my feeds so I get supplements for the nutrients I need ranging from multi vitamins, pre-biotics to iron. 10. My tolerance level for pain is extremely high. It doesnt bother me if doctor injects me 4 times with an intravenous drip needle in 1 foot as long as I can sit and watch what doctor is doing. I dont cry or pull away at all. I easily keep my hand on a boiling hot kettle without pulling away and hitting my head against a wall or sharp edges makes no difference to me. 11. Im prone to infections and get these quite quickly even though Im alone at home with my 24 hour nursing staff taking very good care of me. Although most of the infections we can treat and manage at home, Ive been back in hospital four times again since I was moved over to be home nursed on 30 April 2013. 12. My body also does strange things like causing my sugar levels to rise as high as 29.3 or to fall as low as 0.6. Im not diabetic, but the impact on my body and organs are exactly the same when this happens. Normal levels should be between 3-5.9. 13. Sometimes I turn completely blue, especially my tongue, lips, hands and feet and I then battle to breathe as well. Theres also no logical explanation for this to occur and remains completely random. 14. Every day my eyes turn blue/black and sunken into my eye sockets due to dehydration. Im not really dehydrated because my nurses take very good care of me, but my body thinks that Im dehydrated and then uses the remaining moisture in from my other organs. When this happens I really look bad. Included in the 5 readmissions was another theatre procedure where I was severely anemic as I bled internally for 5 weeks with bloody stools daily as I bled from inside my stomach. Drs had to wait until I was strong enough and infection free as I had more than 20 infections in a 7 week period and wouldnt have been strong enough to handle anesthetics. But on 19 September 2013 I went to theatre and my torn stomach fixed to stop the bleeding. For many months Ive completely stopped growing, this meant no length, no brain or organ growth either. All the supplements and huge volumes of continuous 24 nasal gastric tube feeds day and night finally got me to start growing again. Despite all these problems that have been keeping me in hospital for so long, Im still a very friendly little girl and I love to play. Im very curious and like to investigate everything. I have a very strong will of my own but I am content with everything around me. I accept everything thats happening and that is done to me. Im just very bored and frustrated being between 4 walls every day and even though mommy tries her best to provide me with what I need and to help me, the days are very long being connected to a feeding tube 14 hours a day. Mommy now takes calculated risks on very hot windstill days so that I can go into the garden for small periods of time. I love ambulances and emergency vehicles so sometimes mommy, daddy and sis takes me for a drive to go look at the ambulances and fire trucks. Mommy and Daddy waited anxiously for doctor to say Im medically stable which happened on 30 April 2013 when I was moved over to my own home hospital room where Im currently being cared for, monitored and nursed. The monthly expenses for my special needs i.e. medical formula feeds, feeding bags, feeding lines, full time 24 hour nurses, rehabilitation, a few therapists and continuous follow up visits to doctor plus all the medications are really expensive and although the medical aid has covered the hospitalization and until mid March 2014 partially assisted with the nursing care, the medical aid now no longer assist with any of the costs for my special needs or my nursing care. All my costs are therefore for mommy and daddy to provide for my essential needs. Mommy had to leave the nursing agency in November 2014 and got 2 full time private carers to try and lessen costs for finances we dont have. Without lots of help my mommy and daddy will not be able to take care of me. All of these things I need to be able to live and have a chance at a quality life. If theres anyone willing to help me, I have my own account and also my own registered charity fund, the Reani Badenhorst Charity Trust Fund. I also have my own facebook page ‘Reani Badenhorst Ondersteuning where Mommy tries to give regular updates of how my progress is and what Im going through and there is a few photos of me. Please like my page if you would like to hear how Im doing. Above ALL…please PRAY for me! Account holder: Miss Reani Badenhorst Bank: Nedbank Account type: Nedbank 4Me account (savings) Branch code: 198765 Universal branch code (104509 Cape Gate branch code) Account nr: 2005503223 For help abroad the SWIFT nr is: NEDS2AJJ Reference: your name and surname (unless you prefer staying anonymous) Thank you for all your help, love and support! Reani Badenhorst (written by my mommy Madeleine Badenhorst) Email: madbad18@gmail
Posted on: Sat, 27 Dec 2014 12:57:19 +0000