Support Veljko's fight against ultra rare disease
Donation protected
Hi, my name is Darko and I am Veljko's father. We landed in Rochester, Minnesota, a day before his second birthday with the purpose to look for a diagnosis and therapy at Mayo Clinic.
After few months and rollercoaster of analysis being done there, very rare disease causing all the issues was not identified yet. Severe Autism Spectrum Disorder was named for extreme losing of social skills, but further steps had still to be taken. So we moved to Chicagoland in order to establish regular medical care at Lurie Children's hospital, start with therapies (physical, occupational, speech, feeding and developmental) and continue with marathon and fight to find out what happened to Veljko's brain and how to make sure he doesn't regress again. And to help him catch up with his peers, since there is global developmental delay.
Veljko is being struggling with furious disase since he turned 3 months, that has still unknown origins but ultra rare for humankind.
During his first year, there were multiple consequences to his daily routines and health, which was resulted by:
- global delay of development with a regress in psychomotor development that started around the 6th month of life, predominantly in the area of speech, cognitive and social skills along with delays in achieving the milestone of independent walking
- signs of pseudobulbar palsy with difficulties in independent chewing and swallowing;
- feeding was conducted via a nasogastric tube for almost 5 months before G-tube was placed on the stomach at Mayo (Aug 2023)
- the appearance of various involuntary movements such as periodic rigidity of the extremities and choreoathetosis movements
- demyelination in the Corpus Callosum
- brain MRI showed reduced white matter and enlarged ventricles which was initially seen as brain atrophy
- Intermittent occurrence of melena (gastroscopy, colonoscopy, duodenal scintigraphy and diagnostic laparoscopy could not find a source for bleeding).
By donating, you are supporting him and his family to stay in the States, and pay medical and related bills for the ongoing diagnostic and recovering process. Meanwhile, Veljko is need of treatment at Lurie Children's hospital, Mayo Clinic and other medical institutions over the States that are taking care of him, so can finally start eating properly, keep walking, running and developing in general, as his older brother Vasilije (19 months older than him) and any other happy child do.
Organizer
Darko Stojkovic
Organizer
Des Plaines, IL