Baby Jason Kiania and his mother Ann Wanjiku in hospital. /HANDOUT
One-year-old Jason Kiania has spent most of his short life attached to machines in hospital.
His parents, Ann Wanjiku Kiania and Simon Kiania, watch over him daily—hoping, praying, and now pleading with well-wishers to help raise Sh25 million for a life-changing gene therapy that could give him a chance at a normal life.
Born on May 29, 2024, Jason was referred to Kenyatta University Teaching and Referral Hospital on October 10, 2024 from Gertrude Children’s Hospital while intubated, after flu-like symptoms quickly escalated into severe breathing difficulties.
He was initially placed on treatment for severe pneumonia.
In the Paediatric ICU, genetic tests revealed he had Spinal Muscular Atrophy Type 1 — a rare, degenerative condition that weakens the muscles controlling movement, swallowing, and breathing.
Jason is on a rigorous physiotherapy and occupational therapy schedule, has been weaned off sedation, and is now alert on tracheostomy.
His care has also involved management of electrolyte imbalances and poor weight gain, and he is currently on a dietary plan aimed at achieving appropriate weight.
However, he remains ventilator-dependent and admitted in hospital.
“After comprehensive assessment and follow-up, the patient requires gene therapy as part of treatment for the Spinal Muscular Atrophy Type 1. Any assistance accorded to the patient and his parents will be highly appreciated,” the medical report reads.
His mother, Ann, said Jason was born after a difficult pregnancy but was healthy until one Sunday afternoon when they noticed he was struggling to breathe.
He was rushed to hospital and admitted to ICU.
“At first we thought maybe it was just a small thing, maybe one or two days he would get better and we would go home. We pestered doctors to conduct more tests and that’s when they discovered he had a genetic condition called Spinal muscular atrophy.”
Medical appeal for baby Jason Kiania.Spinal muscular atrophy is a genetic disease that causes progressive muscle weakness and wasting by affecting the motor neurons in the spinal cord, which control muscle movement.
It can impair the ability to walk, eat, and breathe, and is caused by a faulty SMN1 gene that results in a deficiency of the SMN protein crucial for motor neuron health.
“We were so sad, so disheartened and really confused,” Ann said. “With the condition, he cannot support his head, he cannot swallow, and he cannot breathe on his own. His movement in his hands and feet are very minimal.”
Ann and her husband, Simon, fear for their son’s life as the condition can be fatal if untreated.
They are appealing for assistance to fund the Sh25 million gene therapy treatment planned for September 2025 in China.
“Very few rare diseases have treatment available but we are lucky that for spinal muscular atrophy, we have some drugs that are available that could help him. There’s a gene therapy which seeks to replace the missing gene in China," Ann said.
"It’s just come off trials, the babies who’ve received it have been able to make milestones; they are able to sit, to crawl some are even walking now and feed and swallow on their own. These are things we would wish for baby Jason to be able to come home to us and have a relatively normal life.”
She adds: “This gene therapy and the logistics are very expensive costing Sh25 million and as a family we are not able to raise that amount. We seek your support to get funds to buy that drug.”
Donations can be made via Paybill No. 8061567, Account No: Your name or KCB Account 1340176912 (Account name: Jason Kiania Medical Funds Drive).
Contributions can also be sent through 0701216299 (Ann Wanjiku).
