A few months ago, Baby Neillah shot into the limelight with a rare condition, spinal muscular atrophy (SMA) type one which is the most severe, her mother Ruth Wambui says.
Then, people did not understand much about this rare condition.
SMA is caused by a defective gene and progresses in killing nerve cells thereby weakening muscles which eventually weaken. In extreme cases, it affects the breathing and swallowing of an infant.
The spine also bends meaning movement is inhibited.
For Baby Neillah, she has a ‘ward’ at home where she receives basic treatment. It helps them reduce hospital costs which have left them financially drained.
Her mother says she was weak after birth because of the SMA type one which manifests itself quite early unlike the other SMA types.
The more she has grown, the weaker her muscles become. She is past the two-year age limit that is recommended for treatment with the world’s most expensive drug Zolgensma.
When she was born, her mother was told by doctors that she would not make it past two years and she stayed in hospital after birth for four months.
Suddenly, Baby Neillah became stronger and made improvements and her mother thought that it was a misdiagnosis. It was not until she turned two years, eight months that she lost weight suddenly.
In an exclusive interview with Tuko, a tearful Wambui said that she has not lost hope for her daughter but she is aware that Zolgensma costs $2.1 million (Ksh230 million) because she is past the two years mark.
“What I am doing literally is extending her life because even if we get Zolgensma, we’ve already lost those muscles. We won’t get them back,” she explained.
Wambui is now fundraising to purchase a ventilator to have more time with her baby girl saying that he is not giving up although Baby Neliah is almost giving up.
“Today I am asking for the most painful request I think anyone will ever ask. I am asking for an extended life with my baby. It can only be extended with a ventilator and of course, your prayers.
“I am asking us to help fundraise for the vent and maybe, a whole year of supplies and the solar and also clear the medical bill that exists,” Wambui appealed citing an outstanding Ksh2 million hospital bill.
The family hopes to fundraise at least Ksh5 million
You can channel your donation through paybill number: 8021855 Account name: Baby Neilah or M-Pesa Ruth Wambui or 0713064482.