Fundraising for Lukas Etsebeth – Undiagnosed

Lukas Etsebeth

Lukas`s story:

Four year old, Lukas Etsebeth, has a significant medical history involving a brain bleed, increased intracranial pressure, VP shunt insertion, treating for seizures with Epilim, (which made him drowsy and unresponsive), pneumonia, and multiple admissions for chest complications, MRI scans, CAT scans, EEG’S, EKG, Lumbar puncture, Coxsackievirus, Gastroscopy, Panendoscopy etc.

Born with an underdeveloped airway (laryngomalacia), he struggled with breathing since a very young age. An MRI scan in Feb 2017 showed an “air bubble” on his spine, as well as an open space around his brain. The reason for this finding is unknown.

According to some of the best pediatricians, neurologists and specialists, Lukas’ condition is an interesting case and a challenge to diagnose. His blood was sent to the UK and the Netherlands to test for congenital disorders of glycosylation, but the results came back normal.

He recently had botox and got splints, but needs to go again for both, botox and new splints. He also needs intense and ongoing ND therapies.

Lukas can’t crawl, walk or talk. He also chokes a lot and has difficulty during feeding, therefore he can’t feed himself. His gross motor development is delayed and not as it should be at the age of 4.

Specialists can`t find the correct answer to make any diagnosis.

As the botox of October 2018 was unsuccessful, he had to go through the whole procedure again on 20 February 2019. An MRI scan has also been done because a doctor picked up a tumour on his spine that could have long-term adverse effects.

The MRI showed that the tumour on his vertebrae did not pose any danger signs. It was found, however, that his small brain never developed. A cat scan of its vertebrae also showed an indication of scorilosis – and a brace has been ordered for Lukas from the UK.

As for the botox, the one foot was barely in the plaster when he kicked it in half, but his feet are now in new plaster. Follow GEBED VIR LUKAS on Facebook for live updates.

Fundraising for Lukas Etsebeth

Shine Bright Bracelets for Lukas; consisting of turquoise and silver wooden beads – with a Star, Dragonfly or Dream charm. To place an order, contact the agent in your area or shop online. Alternatively, please consider a donation.

“Always shine bright and dream big, chase the dragonflies and never stop reaching for the stars!”

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