“I don’t know how long my son will live, but whatever years he has, I want him to have a good life!” Shamim Akhtar couldn’t control her tears. Whereas her five and a half year son sat beside her expressionless while flipping pages of his Urdu book. I recalled our previous encounter.
Last year, I met Shamim and her son Ali Asghar in Layyah. Ali has Hemophilia-A disease that causes increased bleeding and requires continuous lifetime treatment. As a single mother, she couldn’t afford the cost of two Factor VIII injections a month and had to go and seek help from others.
I shared their story on Insta on 28 May 2020. People contacted me via DM. Within a few days, we raised enough money to provide him treatment for six years, or so we thought. My sister manages funds. She orders injections at a local medical store. Shamim can go there and pick one up anytime. We also arranged home tuition for Ali because he cannot go to school due to the risk of an injury. He is not even allowed to play with other kids.
Yesterday, I met the mother and son in Layyah again after a year. The latest medical reports indicated that Ali’s Factor VIII levels remain <1%. The new prescription says, “one injection every two days!”
Each shot costs 4,500 PKR (US$29), and now he needs 15 a month.
With our initial calculation of two shots/month, we could’ve supported Ali for six years. But we no longer can. Our funds would last for less than a year if we buy 12-15 doses/month.
While we discussed things in a park, Ali kept his eyes glued to the playground equipment. I asked him, “what would you like to become? A doctor, or an engineer?”
He remained quiet. I asked again. He replied, “nothing,” while glancing at kids playing in the park.
I asked his mother, “what do you want for him?“ She had no answer either.
Then the boy stood up and ran towards a swing. She chased him, “Ali, Ali, wait for me. Don’t hurt yourself!”
Next, I saw Ali on the swing. The smile on his face was back.
Suddenly, I got the answer to my question I had asked them both.
The little boy just wanted to play like other kids.
And his mother? She just wanted her son to be alive!
