Although most children grow out of CIDP, that might not happen for Blessing due to his late diagnosis. To help entertain him during treatment, and to help alleviate his pain, Satan’s Little Helper sent him a surprise package.
Blessing has a rare autoimmune disorder called chronic inflammatory demyelinating polyradiculoneuropathy (CIDP). According to Johns Hopkins University, it is a “slowly developing autoimmune disorder in which the body's immune system attacks the myelin that insulates and protects your body’s nerves”.
His mum Mareah believes it developed as a result of viral meningitis, picked up when he was just a few days old. It leaves Blessing with nerve pain in his arms and legs and, although he is receiving treatment via intravenous immunoglobulin (IVIG), it’s not a cure.
“The treatment is designed to keep him stable, rather than fix the CIDP,” explains Mareah.
“When he was first diagnosed, he’d be in hospital once a week. We’ve slowly weaned him down to once every six weeks. He has a chemo port in his chest, because he needs treatment so often. It’ll stay in for up to five years, then either removed or a new one put in if treatment continues.”
Blessing’s hospital visits are a gruelling affair, often lasting for up to 10 hours while the IVIG does its work. It all leaves him feeling very sick and tired. He also fatigues quickly and isn’t at the same physical level as a lot of children his age.
Long-term condition
It’s a tough life for a 12-year-old. While children diagnosed with CIDP can grow out of the condition, Mareah isn’t confident that her boy will.
“It took so long for Blessing to be diagnosed that we’re worried his nerve damage is irreversible, so the point of his treatment is to keep him stable.”
Blessing is currently being weaned off his medication and the aim is to withdraw it completely, but he still needs to go to hospital for those long days hooked up to the transfusion machine.
He had an old pair of headphones that Mareah says made a huge difference to him when he had no other way of entertaining himself, but they have long since given up the ghost. So, it seemed a good idea for Satan’s Little Helper to provide a new set!
Bring the noise
“He’d been asking for new headphones for ages, but we weren’t able to get him any,” says Mareah. “He was so happy to receive a new pair in the post. He uses them all the time and has been falling asleep with them on – but he’s taking incredible care of them, He’s got a proper stand that he made for them and everything.”
Satan’s Little Helper didn’t want to stop there, so we sorted him out with a leg massager to help his nerve pain!
“The massager is really good for his legs as they get really painful and this helps relieve his pain a little bit.”
Good vibrations
Even though it was made for legs, Blessing can also use it on his arms and that has been another excellent way for him to find relief.
“He’s on medication but it’s been great to find another way to help ease his pain,” says Mareah. “I even tried it myself and it was really nice!”