Betty Kyallo took time off her busy schedule to take part in the 24-hour Instagram Live Easter marathon to raise funds for little Ayah’s treatment.
She was diagnosed with Spinal Muscular Atrophy (SMA) and the family needs to raise $2.5 million for the most expensive one-time dose gene therapy treatment (ZolgenSMA) that she requires.
There is a race against time as Little Ayah’s prognosis has few months remaining.
Ayah’s mum, Mary Kathure Mithika during the Live said, “As a parent, I do not understand why the government cannot make sure that this drug is made accessible to help families who have a child who needs the treatment. It is the most expensive drug in the whole world. It is given to children up to 2 years and Ayah is racing against time, she turns 15 months, mid this month.”
Betty was encouraging Ayah’s telling her not to lose hope.
“You have a lot of people rallying behind you. I completely understand you and feel you as a mum, not to the same extent, dawa ya Ivanna was not Her medicine was really expensive also but not to the level of Little Ayah.”
“And I remember her medicine, even for her it was a trial, ile daktari anasema, ‘Betty we are trying but we are not promising you anything.’ I was there with Dennis, they are saying poleni, we are not promising you that it will work and that time it is Ksh 2m and you are not sure that it will work, it was such a difficult time, and that time Ivanna was in ICU for month, she had pipes everywhere.”
“I feel you from a very personal point of view. I know how you go through that situation of Mama Ayah. It is really bad, I remember for me when I would wake up in the morning and every day, Ivanna would lose something, I remember it started with her not being able to stand up properly, then after some time she could not sit, after some time she could not even eat, then she lost speech, then she went into a comma, yaani she lost everything . back to square one.”
Fighting back tears, Betty encouraged Mama Ayah telling her that everything will get better.
“Looking at it now, I don’t know if you follow us, Ivanna is such a big girl, full of life, she is talking now, she is going to school, Ivanna is the best thing that happened to our family. Now you can put her in a class with other children and you can never know she went through something.”
“Be hopeful, you have a lot of people supporting you and she is going to be okay. The miracle that happened to Ivanna is the same one that will happen for little Ayah. Don’t lose hope.”