A Nigerian mom, Mojisola Ogunlana has shared a glowing testimony of how she overcame so many challenges to save her daughter, IfeoluwaOgunlana who has a rare medical condition known as Treacher Collins syndrome.
Treacher Collins Syndrome is a rare genetic disorder that affects the ears, eyelids, cheek bones, and jawbones. The condition is caused by an abnormal gene that affects how the face forms.
According to Dr. Newton Walton Okoh of George’s Memorial Hospital, the condition is known as mandibulofacial dysostosis, which is a very rare inherited developmental disorder, which occurs in about one in 40, 000 to 70, 000 births.
The growth of craniofacial (skull and face) structures is diminished. The condition is recognisable at birth and could be diagonised pre-natally with an ultrasonography.
Treacher Collins syndrome has no race predilection and has equal sex distribution. However, despite the deformity, intelligence is not affected.
Mrs Ogunlana got pregnant nine months after her wedding, she never thought her child would carry the syndrome.
”Her face was oblong. One of the ears was folded,” Moji told ISPAYA, noting that she got different explanations for why her daughter looked that way.
The hospital, where Mojisola had her baby didn’t tell her anything, they just referred her to LUTH. When they got to LUTH, Mojisola was told that her baby’s case was a rare one. She was told that there is no cure, but surgery can make a big difference. The mom-of-three recounts:
”They told me she will not be able to hear. I must not give her anything pepperish until she is 18 years of age and there is a tendency that she might not be able to walk.”
Mojisola prayed, asking God for grace. She encountered many challenges over her daughter and it was so tiring that she began to give up but God always came through for her. She received help for surgery for her daughter. Moji shares her testimony:
”Many years later, she has been hearing. She’s not wearing hearing aid. She can talk. She started eating peppery food since when she was four months old. She walked when she was supposed to walk. She just finished her WAEC and she made all her results. She’s about to go to the university.”
Mrs Ogunlana also visited The Guardian with her daughter to share their story and drive to create awareness of the condition.
She narrated to the news outlet:
”I got married 19 years ago and in 2000, I had my daughter. I did not understand the nature of her disorder. We felt it was a small issue as we only noticed deformation around the ear.
This was three days after birth and we went to the Lagos University Teaching Hospital (LUTH). That was where we knew what would become of her in the near future.
The doctor told us what she would not be able to do in life, including talking. I was advised to learn sign language.
We were told she might not be able to walk; she would not be able to suckle because she didn’t have the cleft palate and the upper palate. Whatever she took came out of her nose as she was lactose-intolerant.
Having heard this, I got home and asked God what He said concerning the situation at hand and I heard vividly “the comfort you receive, comfort another person.” They were words of consolation. I am facing this challenge to encourage others.”
Mrs Ogunlana said that this went on for three years until they were referred to St. Nicholas Hospital, Lagos, and fortunately, she met a surgeon who tried to close the cleft but after nine days, it collapsed. They later heard about Modupe Ozolua, Founder of Bears Foundation.
After consultations in 2003 and with funds raised from the state government, another operation scheduled to hold, was withheld since the former was still fresh. She narrates further:
“We had raised N1.8 million for the operation and I agreed that the equipment be used for someone else. In 2007, they were able to perform the operation on her and it was successful. The cleft was closed. As we speak, she has gone through six major operations.”
With the help of foreign clubs, with like minds, Mrs. Ogunlana, was able to carry on.
“I joined a club in the United Kingdom and I linked up with people in United States of America that have a similar syndrome. They sent some magazines to me. I went through them and I was adequately informed on how to overcome such challenges and the remedy.
There is a need to create this awareness among people. People need to be aware because some doctors don’t even know the name of the syndrome.
She has just sat for her West African School Certificate Examination (WASCE). Now I’m running a consultancy job in that area. I am educating those that have such children not to give up on them.
In a chat with 18-year-old cheerful Ifeoluwa, pictured above, she hopes to be a journalist. She likes every subject she was taught in school. According to her:
“I really don’t have friends, I have a few people, who associate with me and of course, I have my family.”
Mrs. Ogunlana recently release a film on the rare condition to create awareness. She told Gospel Film News:
“1 in 50,000 is the true life story of my daughter. When we gave birth to her we got to know she has a syndrome called ‘Treacher Collins Syndrome’. This syndrome happens to a child out of 50,000.
There was a day my daughter came home and asked that ‘Mummy, is there nobody in Nigeria that has this kind of Syndrome, I want to meet the person, I want to share felling’ and I went to the internet to check, Lo and Behold, I couldn’t get any write up or anybody in Nigeria with that syndrome, though you can find it outside the country.
So, I made up my mind that since what the Lord told me when I had her was ‘the comfort you receive, comfort another person’, because I was asking God what he wanted to say concerning her case.
As a child of God when you have a situation, there is always something that God is saying, so, once you got to know what God is saying every other thing people are saying is noise.
Though Doctors told me so many thing; how she will not be able to hear, how I should not feed her with pepperish things until she is eighteen (18), how she will not be able to walk, they said so many things but I wanted to know what God was saying and the only thing God said was that The comfort which you have received, comfort another person.
When I now realised there is nobody with such in Nigeria and I know deep down that there will be some children with such, maybe they’ve been killed or they locked them up and I thought of creating awareness.”
