Good Morning Angels: Community comes together to give baby Markus a fighting chance
Soon after his birth, baby Markus was diagnosed with a very rare brain condition - Metacondrial disease. The disease affects brain development and causes him to suffer from epileptic fits and seizures.
GOOD MORNING ANGELS 22 NOVEMBER 2017 (BABY MARKUS/BA)
BACKGROUND:
Baby Markus is just seven months old. His parents really, really wanted him. They struggled for eight years to fall pregnant.
Soon after his long-awaited birth, Markus’ parents were confronted with a devastating reality: Markus has a very rare brain condition, Metacondrial disease - that not only affects his brain development, but also causes him to have epileptic fits and seizures. After exhausting all options in South Africa, they found a ray of hope in Philadelphia in the US. Specialists there offered to perform expensive tests for free in order to determine the correct treatment.
They just want him to have a better quality of life and started their efforts to make this opportunity a reality. As a middle-income family, they do not have the funds, but their family, friends, and work colleagues pulled out all the stops to raise R100,000 to get baby Markus to the US. They also secured a place to stay with family and that all important appointment with specialists, who believe they will find the answers as to what causes Markus’ condition.
Now, all they need are flight tickets, and they asked Good Morning Angels to help.
REQUEST FROM: Arika Bothma and Marcell Bruynius
REQUEST FOR: Valeska and her seven-month-old Markus
ANGEL: Sue Petrie, British Airways Commercial Manager: Southern Africa
SPONSORING: British Airways has sponsored return flights for Valeska, her mom, and baby Markus to Philadelphia via London, where he will be tested by experts to start his treatment. The treatment will help lessen his seizures and vastly improve his quality of life and development.
ORIGINAL REQUEST:
The story of a little boy that needs help and a lot of prayers.
Can you imagine as a parent receiving the news that your 7 month old baby has a mind-set of a 6 week old baby and without the correct treatment he could become disabled and that there is a possibility of him not even celebrating his first birthday. This is a reality for one of our work colleagues.
Valeska de Beer didn’t think that after trying 8 years for a baby, their new-born’s future, will be hanging by a thread and he will be diagnosed with Mitochondrial disease.
Mitochondrial is a disorder that occurs when structures that produce energy for a cell malfunctions. A common factor among mitochondrial diseases is that the mitochondria is unable to completely burn food and oxygen to generate energy, which is essential for normal cell function. Symptoms might include poor growth, developmental delays and muscle weakness. And Markus has all of these symptoms. There's no cure, but physiotherapy and medication can help to manage these symptoms at this stage. He is currently on Phenobarbitone & Keppra which helps with the seizures he is getting, and if we don’t send him to Philadelphia in the US the seizures alone can cause brain damage.
This condition is rare and cannot be diagnosed in South Africa, doctors has recommended that little Markus be taken to the USA, UK or Germany to be tested and to see if possible treatment is available for the specific disease he has, as there’s a lot of different kind of Mitochondrial diseases, they are so rare that only a few are known and some of them aren’t diagnosed as yet.
He’s been accepted at the Mitochondrial Program at the Children’s Hospital of Philadelphia where he will get the best help he possibly can get. He already has an appointment with the specialists.
The hospital has generously offered to do run tests for free - this alone would have cost thousands. They can live with family nearby and they are not quite sure how much the actual treatment will amount to. What we need most now is help with flights for Valeska, Markus and her mom (Markus’ dad has to stay home for work). We have already collected R100 000 to help cover their costs, but most of this needs to go towards his treatment.
We will keep on with our fundraising efforts for little Markus, but help with flight costs would really be a great help.
We as her work colleagues have decided that we will try everything in our power to try and help Markus to get him to Philadelphia in order to help him get the treatment he needs so he can have the life that his mother and father planned for him.
With this we ask everyone that is reading this email to share it among family, friends or anyone they now. The more we get this message out the bigger the chances is to get the funds to help Markus. Any amount is welcome, any help is welcome.
For full story, updates please visit the following sites to make a donation or updates on Markus’s progress:
Facebook: https://www.facebook.com/MarkustoUSA/
Kind regards,
Marcell Bruynius and Arika Bothma
Action Motor Group