Murang'a Dad Pleads for Help to Save Daughter Battling Rare Illness as Medical Bill Hits KSh 18m

• A Murang’a father, Gabriel Nyamu, is seeking help to raise KSh 18 million for his 10-year-old daughter Leslie's medical bill
• Leslie was diagnosed with a rare condition, Idiopathic Chylothorax, which causes fluid from the lymphatic system to leak into the lungs
• The condition led to collapsed lungs and nutrient loss; she has been in the ICU for 29 weeks, undergoing treatment in five hospitals (two in Kenya and three in India)
• The SHA medical cover helped with only KSh 350,000 of the KSh 2.5 million local bill and did not cover expenses abroad

A Murang'a father is now seeking help to raise Ksh 18m needed to clear his 10-year-old daughter's medical bill.

Speaking to TUKO.co.ke, Gabriel Nyamu, narrated how the past 29 weeks have been difficult for him and his family after his young daughter Leslie was diagnosed with a rare medical condition, Idiopathic Chylothorax.

This condition happens when fluid from the lymphatic system (chyle) leaks into the space around the lungs, causing complications.

"Chyle fluid was leaking into her pleural space and made her lungs collapse while losing essential body nutrients. She has been in the ICU from November to date, which is now 29 weeks and in five hospitals, two in Kenya and three in India," he said.

The father explained that the young Leslie has so far undergone 12 surgical procedures to try to close the lymphatic leakage.

"She had four tubes on her chest and abdomen draining the chyle fluids 24/7. Sometimes we've drained up to 6 litres within 24 hours, and therefore highly critical since chyle contains very essential body minerals and blood cells and thus has to be replaced daily," he said.

High medical bill

Getting treatment for Leslie's condition has been financially strenuous for the family after the medical bill skyrocketed to KSh 18 million after 29 weeks in the ICU, and treatment in India.

Nyamu said the SHA medical cover catered to around KSh 350,000 out of the approximately KSh 2.5 million incurred in Kenya. However, it could not cover the medical expenses in India.

Family and friends have been fundraising in the past six months and have managed to raise around KSh 9 million, and the family thus needs help in raising the balance of KSh 9 million.

He said Leslie has been making tremendous improvements in the past week, and they hope to clear the bill so that she can finally go back to school.

"She has shown remarkable improvements in the last one week, and we continue to believe God for her healing. She has a life mantra to be a display of God's splendour. She misses school and church so much," he added.

To support the family, use the details below:

Details of rare medical conditions

Information shared by Rare Diseases International indicates that rare medical conditions are illnesses that affect a small number of the population, normally fewer than 1 in 2,000 individuals.

Rare diseases encompass a wide range of conditions, including rare genetic disorders, uncommon cancers, infrequent infectious diseases, unusual toxic exposures, rare immune system disorders, idiopathic illnesses with unknown causes, and conditions that remain undiagnosed or poorly understood.

In third-world countries such as Kenya, patients battling rare diseases face multiple challenges, including delayed diagnosis, limited access to specialists, and significantly high treatment costs.

They also face limited access to knowledge and effective treatments for their rare medical conditions.

Reports also show that patients battling rare diseases face stigma and discrimination mainly due to a lack of understanding of the conditions they face.

In 2021, the United Nations adopted its first-ever Resolution on persons with rare diseases.

The resolution aimed, among other goals, to empower individuals living with rare diseases by addressing their physical and mental health needs, thereby promoting the realisation of their human rights and advancing health equity and equality.

Nakuru family seeks help

In other news, a Nakuru family also previously sought help to raise the medical bill for their father, who died while receiving treatment.

The family said they needed help in raising more than KSh 2.5m to secure the release of his body for burial.

The family noted that the dad succumbed to heart-related complications.

Proofreading by Mercy Nyambura, copy editor at TUKO.co.ke.

Source: TUKO.co.ke