GMA Extra: A Beautiful Mind pays it forward to help other families

GMA EXTRA 6 MARCH 2017 (BEAUTIFUL MIND: INGO LUKEN 8 FEB 2017, 20 APRIL 2016)

BACKGROUND: In April 2016 Good Morning Angels helped Karel and Nandi Koster with a R50 000,00 contribution to travel to the US to find help for their 5-year old son, Ingo Luken.

At the time, he suffered between 50 and 150 atonic brain seizures per hour and he was on 4 types of schedule 5 medicine. However, that wasn’t reflecting any positive results. They ended up at the ‘Family Hope Centre” in the US, where they were able to get help for Ingo Luken’s condition. Since then, his brain seizures and quality of life have improved dramatically. After this success, they registered a non-profit company, A Beautiful Mind. The organisation strives to raise funds in order to help other parents give their children with brain injuries the same chance. Now the Kosters have asked GMA to help them assist two families attend the South African workshop to help their children. The two families that will be benefiting from the organisation are Michelle and Corné Smith and their daughter, Tahlia. Tahlia has microcephaly (similar to the Rika virus effect), with the mental development of an 18 month old. 

Sanmarie and Gert Smith are the parents of twins Ruben and Lara, who were both born with severe cerebral palsy. This condition causes multiple brain seizures. Today we catch up with Nandi Koster to find out how it all went. 

YOU CAN HELP: To help with treatment for children with brain injuries, you can donate to Karel and Nandi’s Non Profit Company, A Beautiful Mind.

Account details:

A Beautiful Mind

Ingo Luken NPC

Absa Cheque

Acc nr: 4089430400

Branch: 632005

Company registration: 2016/155509/08

ORIGINAL OFFER:

Hi Dianne,

What an overwhelming year - we have so many people to thank and especially you and the Good Morning Angels team!

So it is with GREAT excitement and happiness that we would like to share the following brief points:     

    - It has been 109 days today that our son Ingo has been seizure free (largely due to the help from Good Morning Angels!)

    - Nandi indicated from the beginning (on air) that we wanted to pay-forward the assistance we receive

    - We have decided to give away the R50,000 from Jacaranda GMA to assist other families in similar need

    - There is a great opportunity to give listeners feedback and to pay this forward on-air

We have identified two families that we would like to assist financially to attend the Family Hope Center training and evaluation in South Africa next February.

You may recall that this is the center that was able to assist Ingo during our USA visit this past June. February 2017 will be their first ever visit to South Africa and will include parent training and child evaluation (US$5800 / R80,000 including 6-month support). 

Our desire is to support the following two families. Firstly - through pledging R25,000 per couple that we suggest our Beautiful Mind NPO pays as deposit to the Family Hope Centre on their behalf. This will pay forward the R50,000 that Jacaranda gave to us. Secondly - we would want to ask your assistance and that of the Good Morning Angels team to further raise the shortfall for these two families and expectantly even beyond that for other families in need of assistance for this special event next February!

Tahlia Smith (parents Michelle & Corne)

Tahlia has Microcephaly (similar to that Rika virus effect). She is 6 years old with a mental age of around 18 months. The Family Hope Center has previously had good success with children with this condition.

Ruben & Lara Smith (parents Sanmarie & Gert)

Twins Ruben & Lara have severe Cerebral Palsy and also suffer from regular seizures. They are the sweetest pigeon-pair!

Both these families are Pretoria based and are in serious need of financial assistance. Our hearts cry out to them!

We believe that doing a Good Morning Angels program where Jacaranda can present the good outcome of Ingo's treatment and paying forward of Jacaranda funds has great marketing and publicity value for the radio station. The added benefit is that we get to help even more families of brain injured children and have even more success stories to celebrate in the future! Myself and Nandi would make ourselves available on the soonest GMA opportunity.

Kind regards,

Karel & Nandi Koster

ORIGINAL REQUEST (APRIL 2016):

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