Ruth Wambui, a mother of one is relatively well known on various social media platforms, especially because of her inspiring journey of raising a child with an SMA, baby Neila. Remember another precious baby, Ayah who recently also received her treatment for SMA, through well-wishers raising funds for a drug needed to help her, that costs KES.270million, the most expensive drug in the world.
So, what is SMA? Ruth, Neila’s mother explained in a recent interview “Neila was born with a condition called Spinal Muscular Atrophy (SMA), type 1. There are 4 types of SMA. Type 1 is the most severe. SMA means you are born with a genetic condition that affects the muscles, the more you grow the muscles shed off and weaken. So the more she has been growing the weaker her muscles become.”
Neila and babies born with SMA need a lot of care and attention. It is also an expensive affair that requires a home setup that is well equipped with oxygen, ventilators, and other medical instruments to facilitate the survival of the patient.
It is already draining as a physical task, but there is also mental and emotional aspect. Doctors have told Ruth before that giving up is an option, because of how mentally draining it is to manage SMA. But Ruth is not one to give up saying, “My baby has life in her. Why should I give up?”
Ruth says, “I feel that people give you the energy you reflect. If I approached people to feel sorry for me, that’s the energy they will get. I’m the one who even tells people to stop crying. That’s the energy I ooze.”
Like many genetic and difficult conditions like SMA, the weight financially and emotionally can be draining. It goes to show how much community support plays a role in such health scenarios. Most of the time, like in Ruth’s case well-wishers and donors are the ones who help you get through financially, whilst friends who check on you offer emotional support.
When you look at different videos Ruth has posted, you can see the love in her eyes and her baby Neila’s eyes as they play with each other and look at one another. One can see, that though conditions like SMA can suck the life out of you, love is what brings true healing. Love reigns even when it seems impossible.
