Nneka’s inspiring story continues here. If you haven’t seen the first part, see it here.
Bubu, as she fondly called her son, was the easiest baby ever; he met and exceeded all his developmental milestones on time ( she was checking the targets consistently). He walked at 10 months, had perfected speaking well (appropriate for his age that is) by 11 months and was very social and cheerful. However, shortly after his 1st birthday, he started presenting with gastrointestinal issues – severe constipation that would not abate even with dietary changes; so much so that the doctors had him on lactulose daily to help him move his bowels much without success. He also started coming down with monthly or bi-monthly bouts of upper respiratory tract infection that was blamed on the fact that he sucked his fingers and was therefore exposed to bacterial infection.
They consulted the doctors about this and other concerns and a possible link to autism as they discovered from their research, but the doctors allayed their fears. He continued to thrive till a day after his shots at fifteen months when he fell seriously ill and was admitted for about a week. About two weeks following his discharge from the hospital, she noticed that he was stuttering and within the next two weeks it was obvious his words were beginning to sound quite jumbled up, and it appeared like he was exerting some force to speak.
She resigned from her career dream job to take care of Bubu and stimulate brain activity; and like she didn’t already have enough to contend with, head trauma was added to the pile, as one evening after taking a bath, she carried Bubu into the room to get him dressed. As she pulled on the wardrobe door to get his clothes, the heavy door came of its hinges and landed on his head leaving a scar that remains till date. Wahala!! What a freak accident!!! All of this on a newlywed mother that loved and served God?
Bubu at 18 months had lost almost. all his speech and she was advised again that some male kids were just like that and would eventually pick up what they had lost; they agreed to give it till 24 months and see what happens. She went back at 24 months and the doctor was equally as confused because he had been taking care of the child since he was born and had documented all his developmental achievements; she also let him know that they had noticed a reduction in his social interaction otherwise he was just as rambunctious as he had always been, easy to work with, no tantrums or any other sign really that anything else what wrong. He was very engaged and displayed levels of intelligence in certain areas well beyond his years.
At that point, the doctor referred them to a Speech Language Pathologist who assessed him and offered a diagnosis of PDDNOS- Pervasive Developmental Disorder Not Otherwise Specified which is an autism spectrum disorder. This was yet another adversity, another challenge, another battle. But Nneka had been there before and this time she was not ready to fall back and listen to any human any more. Her own triumph over fibroid complications and infertility had taught her a thing or two. Talk about a cloud of witnesses. She plunged herself into research to try and understand what was happening to her son, and what she had to do to get him out of it, knowing that every step of the way she was walking this walk with God. She sought His face relentlessly, she tarried, she waited for clarity on the way forward and she walked in the path that she was led to by the Holy Spirit.
All these led her abroad again where the doctors ran a range of tests which showed that Bubu had co-existing conditions of severe gastro-intestinal complications, poor thyroid function, an inability to detox, possible mitochondrial dysfunction, a severely compromised immune system and confirmed mercury toxicity. Whoa!!!!
They schooled her on the many things she needed to do to nurse him; she added prayer and praise into the mix and returned to find the best suited centre for his therapy totally convinced that Chukwuebuka will recover and all lost skills completely restored.
Five years after his initial diagnosis Bubu is doing exceptionally well, he has gotten speech back and is making continued progress and well on his way to complete recovery by the grace of God. I can testify that he is an incredibly sweet young man, hard working child and always wearing a smile with a spring to his steps even on the bad days. After 3 years in a special school, he has transited to a regular school with a facilitator; he is exceptionally gifted and loves maths, IT and music (he taught himself how to play the keyboard at 3 years). He continues to amaze his parents and family each day; they still have a little way to go but, they are sprinting to that finish line with joy in their hearts and immense gratitude to God for His Grace which continues to see them through.
For Nneka, 10 years and seven surgical procedures later, she is still standing STRONG and in an even more deepened relationship with God; her family is thriving, triumphant in adversity, and she has become a change agent. It’s simply incredible.
What a storm! But Nneka saw this process as her calling. Her experience revealed that Nigeria still has a whole lot to do in order to break down the walls of ignorance, shame, stigmatization and denial surrounding having and caring for children with special needs, and she threw herself into it.
Her pain wouldn’t go to waste. After months of prayer and defining her vision and mandate she started a nonprofit organization called The Child Restoration Initiative, an educational advocacy group for children with developmental disorders. Please see www.tcri-ng.org
Some last words from Nneka:
“I am amazed at how patient, how prayerful, how empathetic these trials have made me. It has been a process indeed and God has moulded me and moved me from the woman who would have been content with her husband and kids and her immediate family, to a warrior mum, a champion for special needs kids, and an amazing daughter of heaven.
To the couple or woman that has been told she can’t have a baby, please, never lose hope or faith; God is the Master physician and is able to do things that ‘science’ cannot comprehend. I have medical proof from 3 different continents that I should not have been able to conceive kids naturally but I did, TWICE by the grace of God.
To the family that have received a diagnosis of an autism spectrum disorder, I say EARLY INTERVENTION IS KEY. There are no guarantees but there is a hope for recovery and the 1st step is to shun denial and the fear of discrimination and stigmatization. Undertake to do the back breaking work needed; lavish a whole lot of love and affection on your child and continue to pray without ceasing. I know parents with recovered children in this country, I don’t care what anyone says about the possibilities of recovery; God has the final word and if He has done it for others, and He can do same for you, just never give up. Our ultimate goal as parents is to do our utmost to ensure that our children realize and reach their full potential and hopefully live a healthy, independent and successful life and so they will by His grace.”
Many thanks to @nnekaobiagwu for sharing. Love you so much Sis. Thank you for being such an inspiration, God bless you.
Images: Google Images