Imagine Neillah sat! - Pulse revisits girl who had been given 11 months to live

A story on beating the odds, 2 years after she had been given months to live

Ruth Wambui with her daughter Neillah Zuri who is living with Spinal Muscular Atrophy (SMA) Type 1

In March 2019, Pulse Live Kenya highlighted the story of Baby Neillah Zuri Mirera who - at the time - was admitted in hospital with complications arising from Spinal Muscular Atrophy (SMA) Type 1.

Neillah's mother, Ruth Wambui, was dutifully by her daughter's side with her one desire being to see the then 1-year-old Baby Neillah discharged.

All the while grappling with the shattering prognosis that her sweet little girl would likely not live to see her second birthday. At the time, just 11 months away.

"My baby is a fighter!" Ruth tells us on our second visit, this time at their home, just outside Nairobi city.

How was Neillah’s 2nd birthday for you?

"I had saved up for a party. I know that we had been told that she wouldn't make it to her second birthday but I saved up anyway because I knew in my heart that she would make it! It was a beautiful day, it was a birthday celebration and a thanksgiving. She was still strong, her muscles hadn't weakened off as much as they have now.

"I felt like we needed to celebrate that day because I felt like it was a huge milestone! Not only did God have plans for us to see our second birthday, but even our third! But because of Covid-19 we had a small party, it was a beautiful moment," Ruth narrates.

How is Neillah doing?

This writer can confirm that the first thing you will notice when you meet 3-year-old Neillah is her beautiful, searching eyes! And in a remarkable way, she doesn't need words to communicate with you, her eyes tell it all.

The Pulse team had the privilege of being present as a Physiotherapist conducted a medical consult on Neillah, taking Ruth through techniques that will make Neillah more comfortable and strengthen her muscles.

Neillah's mobility is greatly affected by her condition. Ruth tells us that, of even greater significance, is the effect of SMA on Neillah's respiratory system.

"Because of the nature of her condition, her muscles continue to get weak. She is struggling to breathe, it is as if she is running a marathon constantly. And the danger is one day she will get tired and just stop struggling. That is what kills most SMA babies.

"She is struggling to get air into her lungs and you can even see that her chest has bulged out. And for that reason, the doctor's words now come back. Back then we couldn't understand it fully because they were just words but now we can see it happening. And with her condition, there is no coming out," Ruth narrates.

Neillah's care-givers have to constantly monitor her oxygen saturation levels and be ready to administer supplemental oxygen when the level plummets.

The Physiotherapist, Veronicah, recommends exercises that will help Neillah get more oxygen into her lungs, one of which becomes the highlight of the day for Ruth.

"Imagine Neillah sat!" Ruth exclaims in a phone call with a fellow Mom taking care of an SMA baby.

Ruth explains to us that because of the "saturations", coupled with "secretions" which have to be monitored, Neillah cannot sit for long. She also tells us that on that day, when we witnessed Neillah sitting, it had been the longest she has ever sat without complaining.

Baby Neillah needs your help

"I know some people tend to say and maybe think that either way, she is going to end up there [that Neillah's illness is terminal]… But if I can get even just two extra days with my baby, I will go for it," Ruth asserts.

Neillah's care-givers are looking to get a ventilator to assist Neillah in breathing.

"We need to support her, not with oxygen but now with a ventilator. And unfortunately, once she goes onto a ventilator she may never come out of it. We don't want her to reach a point where she is in dire need for the ventilator and it's not available. That's why we need to get that ventilator this early," Ruth appeals.

If you would like to help Neillah breathe, contribute to the Neillah Medical Fund on Paybill Number: 8021855.


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