‘ I want to create awareness on Treacher Collins Syndrome in Nigeria’

Young and cheerful, 18-year-old Ifeoluwa Ogunlana has a rare medical condition known as Treacher Collins syndrome.

This has not deterred her. Ifeoluwa, in the company of her mother, Mrs. Ogunlana Mojisola, visited The Guardian recently to share their story and drive to create awareness of the condition.

According to her mother: “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.”

Continuing, Mrs. Ogunlana said: “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.”

She 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.

“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 Ifeoluwa, she hopes to be a journalist. She likes every subject she is 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.”

For Mrs. Ogunlana who is set to release a film on the rare condition and create awareness: “We have a script ready.

The casting has been done and my daughter will also feature in the film.

I believe that there are others in this country, who are like my daughter, but are scared to bring them out.

We hope that the movie would bring the necessary change,” she added.

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.”