Boy, 5, pens emotional letter to Uhuru appealing for help
Thursday, February 20th, 2020
Five-year-old Ethan Macharia has penned an emotional letter appealing for President Uhuru’s help in paying for his treatment in India.
The boy and his mother have been stuck in India for weeks after failing to raise money to pay for a brain surgery.
According to Veronica Njeri, the boy’s mother, Macharia fell while playing in November 2018 and sustained severe head injuries.
Soon after the fall, Macharia begun experiencing intense seizures.
The daily frequent seizures, Njeri says, have affected his health and forced him to drop out of school.
Overtime, the seizures have also caused injuries on his body.
"My son was leading a normal life until the unfortunate incident that changed our lives forever. We have spent the last 14 months trying to raise money for what doctors call a Palliative VNS surgery that's supposed to suppress his daily seizures as a result of the fall, " she says.
In a letter titled “Dear Mr. President”, Macharia appeals to the Head of State and well-wishers to help him raise the Sh3.5 million needed to pay for the surgery.
Macharia who aspires to become a footballer, says that getting the treatment will enable him to resume his education and play with his friends.
In the letter written with the help of his mother, Macharia details how he fell on his head as he was playing with his friends terming the encounter as ‘very painful’ and one that left him with a ‘bad injury’.
“This is the second time we are here in the last 14 months and we couldn't raise enough money the first time,” says the mother of one.
Since the fall, the family spent over Sh1.5 million for treatment in different hospitals in the country before going to India for specialised treatment in March last year.
During their visit to India in March last year, Macharia was diagnosed with Glute1 – a rare condition characterized with lack of protein required for glucose to cross the blood- brain barrier.
But doctors recommended further tests which were too expensive for the family and would take up to 3 months before getting conclusive results.
Njeri came back home and after the three months Macharia tested negative for Glut-1. His condition improved for a while before deteriorating.
The seizures became more frequent, his head support weakened.
The mother bought him a helmet to minimise injuries due to multiple falls.
During a second visit to India in February this year ,Macharia was diagnosed with diagnosed with refractory epilepsy a seizure disorder that cannot be controlled with drugs.
Doctors in India have recommended the palliative Vagus Nerve Stimulation (VNS) surgery as an alternative treatment.
According to Mayo Clinic, VNS involves stimulating the vagus which is the longest cranial nerve emanating from the brain using electrical impulses. There is one vagus nerve on each side of the body, which runs through the chest, neck and abdomen.
Njeri , a customer care agent says illness has depleted the family finances and appeals for help in treating her only child. Njeri and her son have been stuck in India since February due to lack of funds. Cumulatively the family has spent over 3 million in Macharia’s treatment.