In a span of two years, nine-year-old Alena Mwende has undergone 21 delicate surgeries on her wind pipe and is not about to stop soon.
What started out as a viral infection when she was two years old, has turned out to be a living nightmare for her and her parents, Peter and Selpher Mutua.
Surgery is the only treatment available for Alena’s rare medical condition – laryngeal papilloma – a condition that causes tumours to develop on the windpipe obstructing the airway.
The tumours recur frequently and require repetitive surgery without which they become potentially fatal.
Since her diagnosis in February, 2014, Alena has been in and out hospital, has been attended to by five doctors including a specialist at Apollo Hospital in India and lost her voice but the ailment is yet be fully treated.
Her latest surgery, a tracheotomy, was done in November 2015 to aid her in breathing after she developed more complications.
An incision was made in front of her neck and a breathing tube inserted through the hole into the wind pipe.
“Alena’s first operation was done in February and after four months the tumours recurred. Then they returned after two months, then [every] one month for next couple of months before it came to two [every] weeks then 10 days when the tracheotomy was done,” narrated Ms Mutua during the interview at their home in Mikindani last week.
Mr Mutua said that the way forward now for Alena is a new medication known as cidofovir that doctors have prescribed which they say can aid in treating her condition after she undergoes 10 more surgeries.
“After the operation, the doctors will then inject the area where the tumours were with the aim of killing the virus as well as slowing the growth of any tumours in future,” Mr Mutua added.
What is worrying the two who work at a child rescue centre is where they will get the funds for the surgeries.
A well-wisher has offered to pay for the medication, which costs Sh130,000.
The family has to look for funds to clear for the surgeries and cater for other medical expenses.
Already, they have a debt of Sh78,000 owed to a Mombasa hospital and Sh181,265 owed to Pandya Hospital for all the treatments and operations that have been administered to Alena.
Right now, they need Sh1.2 million to facilitate the 10 surgeries at a monthly cost of Sh120,000 at Nairobi Hospital.
Alena on the other hand, is a top performing pupil at Mikindani Royal Comprehensive School. She is active and full of life.
One can hardly tell that she has undergone more than 20 surgeries or that she is breathing from an incision on her neck.
The only reminder of this fact is when she carefully removes a scarf from her neck and displays the hole from which a tube runs through.
“We draw our strength from Alena. She is one young lady who will turn out as position five despite missing school for two weeks and smile at you when in the intensive care unit,” said Mr Mutua.
He added: “Many times people ask us how we manage to hold on despite passing through challenging times. Her zeal to fight is what gives us the resolve to fight for her.”
Ms Mutua added that Alena, who is the last-born among four siblings, has also learned how to take care of her artificial breathing pipe and regularly removes and cleans it on her own.
She added that before her condition became worse, Alena loved sing and recite poems, both in church and in school where she would also lead her colleagues.
This she confirms asked her what career she would like to pursue.
“I would like to be a singer and a designer,” She hoarsely whispers as she goes to the bedroom and returns with little doll clothes that she has made.
Help for Alena can be sent to Co-operative Bank account number 0011 0944 6381700, under account name Alena Medical Fund or M-Pesa pay bill number 301082 – account, Alena.