The weakness in my bones

Daniel Mwangi (pictured) was born with hypophosphatemic rickets. This is a condition that affects the bones making them brittle and leading to deformities. While the condition had affected his childhood, he had learnt to live with it, and it wasn’t much of a concern anymore in his day to day life.  Until he became a dad. 

“As a child and being limited in how much I could run or walk, I hated not being like the other children. Walking to school, my dad would have to carry me and my bag and in the evening, my brother would give me a hand. My three other siblings suffered from the condition. We inherited it from our mother, but suffered through the years without a diagnosis.”

While as an adult he lived seemingly undaunted by his condition, ghosts from his childhood resurrected after he became a father. His little girl Stacy seemed to have inherited the condition from him.

“Then it all came rushing back. The taunts due to my deformed legs and the pain I still experience to date when I walk too far. I didn’t want my little girl to have to go through that. But here we were.”

Stacy was born a healthy baby girl. His father and mother had nothing to worry about until they noticed she had delayed milestones.

“The condition was diagnosed immediately I started taking my daughter for checkups.  Then the doctors decided to do some checks on me and found out we had the same condition. They detected delayed bones formation, leg and weak body strength.”

One of the doctors advised Mwangi to seek further rickets tests at Kenyatta National Hospital. The results necessitated the doctor to prescribe some calcium medicine for Stacy hoping that it would help remedy her poor bone development.  

The calcium medication, however, didn’t seem to be improving her condition. A doctor then ordered some phosphate levels tests and that is when they realised that her body was not holding on to the needed phosphate and was instead excreting it through urine as soon as it came in. They were advised to put Stacy on phosphate supplements to replace the amount she lost.

Watching his daughter grow up has been a bittersweet experience for Mwangi. Stacy is now in Grade Four and her legs have already taken on a severe bowed shape/

 “I am worried about how she is going to cope with it all. I know the pain and I don’t want her to go through it. My biggest challenge was having to explain to her why she was different.”

Also the challenge of making enough money to buy the expensive phosphate medication is something he grapples with daily. The phosphate supplements, he says, helps them manage any pain that comes with walking. 

 Father is now helping his daughter on how to steel herself from the challenges brought on by the disease.

“I keep losing my teeth and getting cavities. So dental hygiene isn’t something we can play around with. I also have to teach her how to avoid getting hurt leading to bone fructures which we are prone to.”