Good Morning Angels: Helping a family do the best for their young son

GOOD MORNING ANGELS 20 APRIL 2016  (IGNO-LUKEN)

Helping a family do the best for their young son

REQUEST FOR: Ingo Luken Koster

ANGEL: Good Morning Angels Fund

SPONSORING: The GMA Fund get the Koster family’s fundraising effort underway, to make the trip to the USA for Igno-Luken’s treatment a reality with a contribution of R50 000,00

YOU CAN HELP: 

If you want to help the Koster family, please email Nandi on [email protected] 

ORIGINAL REQUEST:

Hi Angels

Short story about the need for funding....

We have a beautiful baby boy  (Now 4 and a half years) that was born on 27 weeks with a birth weight of 930 grams.He had ventricular bleeding and the extend of the damage would only be visible later.

We were in ICU for almost 100 days and he was in hospital every month in his first year .

We as parents have a "never give up" attitude as we also love extreme sports and have a spirit for adventure and we just said "Any challenge bring it on " God will never take you on a journey were His Grace wont carry you. We immediately started intense therapy not even knowing what the brain injury involved. We just knew start something and rather earlier than later.

Then all went well until Nov 2014. We woke up one evening to find Ingo in a spasm shaking terribly and in his eyes you could see he is completely not there and he was barely breathing.

After 18  months in and out of neurologist consulting rooms neuroscience hospitals  scans MRI's FMRI's EEG's by the dozens in and out of ICU almost every second month and naturally medical bills coming towards us like a tornado with a fixated focus on his target....

The diagnosis was as follow. He has severe brain seizures Atonic and Tonic-clonic and Dr said in 15 000 patient that he has seen this is completely of the spectrum chart......meaning very bad!!

He cannot even go to school or do normal things like swimming that he absolutely loved and that is just were my heart crashed in 1000 pieces. From a normal blonde curly hair blue eyed angel to taking all his dreams from him.

We are now at a point were the possibility of brain surgery is not an option as he will loose the use of both his hands and that only stops the one tonic-clonic seizure and then they can cut the brain in half to stop the Atonic seizures.........The Dr recommended that he is not willing to even take that risk. We are left with our faith , our family and the believe in neuroplasticity that the brain can find new pathways for normal life skills as he is going backwards daily.

He has between 50 and 150 Atonic brain seizures per hour and the 4 types of schedule 5 medicine is not showing any result in the last month.

So we need urgent funding to go to Phillidelphia USA to the Family Hope center where a team of 38 speacialists will evaluate him and start intense therapy. This is our only hope left to get our little boy back and we as parents will not stop fighting for him to have a adapted but normal life and be seizure free ..

The cost of the trip is around R190 000 and our dream is to bring back hope to parents with brain injured kids as the neurologists are incredible but they don't believe in neuroplasticity and we believe that kids brains can be reformed we have heard of parents that had their kids seizure free in 2 weeks. We need a miracle as we are running out of time and options and need to be in the US end of May already. The team in the US is making space for us but financially we are between a rock and a hard place.

So Angels of Jacaranda spread your wings and fly with us on this heartbreaking journey and lets bring not only hope to our family but to thousands of hopeless brain injured kids in SA. 

Blue skies

Karel & Nandi Koster and our Lion heart and fighter Ingo-Luken Koster