Fundraiser launched for young Kildare boy suffering from rare illness
George Danila, 7, needs specialist treatment in the US
An online fundraiser has been launched for a young boy from County Kildare boy who is suffering from a rare illness.
Kildare resident Anamaria Danila has set up the fundraiser on the donation website GoFundMe, in aid of her seven-year-old son George.
Explaining her son’s condition, Ms Danila said: “George's difficulties began with a gradual regression; we noticed changes in his behaviour, followed by episodes of severe aggression and extreme fatigue.
“Over time, his symptoms became increasingly complex.”
She continued: “George has severe cerebral autoimmunity affecting his brain, together with mitochondrial dysfunction and significant neurological, cardiovascular and rheumatological problems.
“He experiences severe headaches, extreme fatigue, episodes of dysautonomia, chest pain, panic attacks, periods where he appears to ‘zone out’, epileptiform activity and seizures, as well as involuntary sounds and other neurological and behavioural symptoms. His condition also comes in flares.”
In addition, she said that her son is on the Autism Spectrum.
CONCERN FOR GEORGE
Ms Danila also said that during some of George’s episodes, he becomes so unwell that he is unable to walk for a week or more.
“As his parents, it is incredibly difficult to watch our child lose abilities, experience pain and exhaustion, and become so unwell that even walking can become impossible,” she explained. “For years, we have done everything we could to help George; we have travelled to different countries across Europe, seen specialists, undergone extensive investigations and laboratory testing, and tried different treatments and therapies.”
She elaborated: “During this journey, our family has spent approximately €150,000 on medical investigations, treatments, therapies, travel and other medical-related expenses.
“We have made these sacrifices because George is our son, and we could not simply stop looking for answers; we have some answers, but not enough.”
Ms Danila further said that George needs to be brought to the United States of America so that he can see a specialist whose clinical experience is, according to her, ‘particularly relevant to George's complex medical presentation and severe cerebral autoimmunity’.
“We believe that having George assessed and treated by this specialist could help us better understand his condition and determine the most appropriate way forward,” Ms Danila said.
However, this will cost a substantial sum of money, and as a result, the fundraiser was set up for George.
WHAT THE FUNDS WILL BE USED FOR
Ms Danila asserted that all of the money raised for the fundraiser will help with:
- Specialist consultations
- Laboratory and diagnostic investigations
- Medical testing
- Multiple courses of intravenous immunoglobulin , also known as IVIG
- Recommended medical treatments
- Medications
- Travel to the United States for medical care
- Accommodation related to medical appointments
- Follow-up care and further investigations
She also stressed: “Again, this fundraiser is not for George's regular weekly therapies; we are continuing to cover those costs ourselves.”
The fundraiser for George can be found on the official GoFundMe website under the name ‘Help 7-Year-Old George Access Life-Changing Treatment in USA’.
It has a €100,000 goal.