Latest update September 13th, 2026 10:36 AM
Infant faces death due to a rare genetic condition
– Mom seeking support for vital treatment, permanent relocation to the UK
(Kaieteur News) – Mitochondrial disease is a group of chronic, genetic disorders that happen when mitochondria—the energy factories in nearly every cell of the body—fail to produce enough energy for normal cell and organ function. In children, the disease can cause severe health challenges which can lead to death at any given moment.
This is the reality of baby Spencer and his mother Imarah Radix, a former Miss World Guyana who spent months in Colombia, where her son went under extensive observation and treatment for the disease.
Baby Spencer has undergone extensive testing as a result of mitochondrial disease.
Faced with the prospect of death of her infant due to his condition, Radix has launched a 2nd campaign to raise awareness and garner public financial support as the family plans to relocate permanently to the United Kingdom where treatment is more readily available.
Radix spoke to Kaieteur News exclusively about her son’s condition and hopes for his survival. Radix noted that at just 10 months, Spencer has undergone extensive testing for the chronic disorder and now lives on treatment which is not only unavailable in Guyana but is quite expensive.
She explained that “In children, mitochondrial disease causes an entire lack of energy in all cells and organs. The body tries to compensate by feeding off its own organs killing the child.”
Heartbroken the mother asserted that “Spencer can die from respiratory failure and multiple organ failure at any time. This disease is taking everything from him every single day. It’s having a front seat to watching your child die that is worse than childhood cancer”
As a result, Radix said a mitochondrial cocktail of high dose vitamins is prescribed tailored to each child’s diagnosis to maximize the child’s remaining cellular energy levels to keep them potentially alive longer.
According to her, the current lifespan for children like Spencer is 2.5 years.
Imarah Radix and baby Spencer.
She explained that “Spencer exact diagnosis is mitochondrial disease SDH -complex 2 deficiency- autosomal recessive Leigh syndrome. It is the Leigh syndrome that is going to kill him through cardio myopathy; heart attacks that lead to heart failure. He is already losing his eyesight and hearing at 10 months old. This is how fast the disease can progress. The disease causes developmental delays in typical milestones. For Spencer this is walking, crawling, talking. Extensive deep brain, neurological damage to the basal ganglia…a feature of this disease is hypotonia where the children are floppy and cannot sit or hold their heads up on their own.”
However, through intensive speech, occupational and physical therapy, Spencer has been able to learn how to eat food, say basic words and improve his physical tone.
RARITY
According to the global health calendar, World Mitochondrial Disease Week, held from 14 to 20 September 2026, raises awareness about mitochondrial diseases (mito). It aims to improve the lives of people affected by mito and to increase awareness among doctors and the general public.
Due its rarity, most people have never heard of mitochondrial disease. According to recently published health research, the disease affects 1 in 5000 people. Nevertheless it is the second most commonly diagnosed, serious genetic disease after cystic fibrosis. And due to the lack of awareness and capable testing in several parts of the world, the disease can often go undetected.
According to Radix, this makes Spencer possibly the first person from Guyana or the Caribbean to be diagnosed with this incredibly uncommon disease.
“For mitochondrial children, it sometimes takes their whole short lives to get a diagnosis or they die before getting genetic testing or it’s simply not available in their home countries. That’s why raising awareness about it is so important to me. It is so important to inspire more research into this disease to find a cure for children like Spencer,” she said
VITAL SUPPORT
Now faced with a new challenge, the mother of two has noted how support has played a vital role in her son’s survival.
I am extremely thankful that due to the help and support from several individual corporate bodies, I was able to get Spencer some help just in the nick of time.”
She explained that for her to get medical assistance in Colombia, “We were able to raise almost $30,000 USD through a GoFundme account organized by Ms. Teri Walker.”
She noted that donations poured in from a number of organizations and individuals including Guyana Public Service Corporate Credit Union- Mr. Trevor Benn, United Women for Special Children, Clinton Urling -Germans Restaurant, The Government of Guyana: Ministry of Health, President Irfaan Ali, the Chartered Accountants of Guyana and the Chartered Accountants Of The Caribbean, ACCA Caribbean, Avianca Airlines and the Classy Closet.
“Kris Sammy of Excel Guyana had Spencer’s treatment shipped to us in Colombia”
Spencer and his mom engage in therapy to address some of his developmental delays.
Radix also thanked Mr. Ramesh Seebarran, CNOOC Country manager- Mr. Anand Gohil, ENet CEO Mr. Vishok Persaud, Mr. Chaman, Andres Botero toro, of the four points by Sheraton, Iman Cummings, Samantha Reid, Gregory Shaw, Fabian Shaw, Monica Sharma, Joe Ali, Tropical construction, Sonya Oodit, Bebi Hassan, the Guyana cancer foundation, Lori Narine, SHEA, Kriti, Sita Sugrim, Mr, Abass Farouk, Mr. Joe Jagmohan, Mr. Delano Randy, Mr. Ali Khan, Mr. Greybern Livingston former Colombian ambassador to Guyana, The Homi Pediatric Hospital, Laura Para of the International Office and Dr. Jason Ramcharran, Neurologist GPHC as well as Dr. Satram Woodlands Pediatrician.
Radix is now seeking support to relocate permanently to the UK.
“We are desperately trying to relocate to the UK, where the treatment is more readily available because we also have to run tests on Spencer’s older brother, William as well whom we suspect may have the same condition, his condition is urgent as well,” she said.
“The money, we need to raise will be used towards speech, occupational and physical therapy. Medications, travel, citizenship paperwork and migration expenses,” she added.
Persons wishing to assist can make donations or inquiries via email at Imarah.radix@gmail.com or WhatsApp at 676-7326. Or can make donations to Demerara Bank Account number: 2424497, Beneficiary Name: Kaierouann Radix, Address: Lot 80 Cowan Street, Kingston Georgetown Guyana, Bank Address: 230 Camp & South Streets, Lacytown Georgetown, Swift:DMBKGYGT
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Irfan Ali could use the DEPORTEES FUND to Guyana to fully help this child
relocate to England, with his mom, for his treatment. This is not the child’s
fault being born with all this medical complications. Guyana’s newer Hospitals
not yet equipped to handle this or other difficult health issues. The poor in
dire need have no alternative than to seek Public help, since their Government
health facilities are seriously lacking in many ways. Seeking donations, is not
a Crime, as not everyone is rich, just a few are.