July 28, 2013 – OkikiJesu Olawuyi, Nigerian Baby Girl Born Without A Skull Gets New Head In The US; Parents Seek Donations
With much expectation, the world is waiting to see OkikiJesu Olawuyi grab a fitting place in the Guinness Book of World Records. Many across the world want to see this happen. And what that means is that a Nigerian child is well on her way to making history once she scales the mountain of surgeries standing in her path of life.
OkikiJesu Olawuyi was born without a skull but not without a will to live. Bones from her hands are being obtained to construct a skull bone to help her live. Amazingly, she is winning this battle for her life at John Hopkins University in far away United States of America. There, the best hands the world can assemble are with her every passing hour fighting a medical war to give life to a miracle child who has announced to the entire human community that she has something different to offer. First grade surgeons – irrespective of colour, race and tongue are tasking their expertise to see that this wonder of the 21st century lives to tell her story and reports say that they are doing a great job to save her.
OkikiJesu is getting moral and material support from across the world to help her live. An avalanche of support is coming her way. Her parents are carrying the burden of pain and anguish with stoic patience. They are fighting to remedy a medical case they cannot tell how it all started. The child needs a lot more financial assistance to pull through, her father, Mr. Caleb Olawuyi, says. He disclosed that she needed an additional $500,000 to undergo the final operation that would enable her live a normal life. Experts say that is possible and they can achieve that. While appealing for generous support from government, corporate organizations and private individuals to help the baby live, Mr. Olawuyi, has equally urged government to set up funds to assist babies afflicted with critical ailments. Speaking straight from the heart, he noted that one needed to be close to a child in pains to know how it feels.
Since news of the child’s medical condition was disclosed, the world has been aghast. She was born on May 11, 2010 with a rare birth deformity which means over 50 per cent of her skull doesn’t exist. The world has not seen anything of this stuff. In recorded history, Sunday Sun gathered that this medical condition has never been reported anywhere. The child’s condition is one that appears to have turned medicine on its head, having thrown up tremendous professional challenge to the human race. Now, the very best the world has known are fighting a crunchy battle to overcome this, leaving many – particularly those with hearts of stone- wondering if there is nothing they can offer to help.
Now from the home sector, help is coming for three-year-old Okiki and her parents. Since the condition of the baby became public knowledge, a non profit organization had stepped in to assist. Global Initiative for Peace, Love and Care (GIPLC) has been doing all it can to give life to the child whose medical condition is not traceable to her parents. With the assistance of the organization’s Coordinator and Project Manager, Mr. Nuhu Kwajafa, the child and her parents were on May 4, 2013, flown to the United States. There, she is currently undergoing skull reconstruction surgery at the John Hopkins University Medical Centre.
Now, the child’s and her father’s cry for help comes ringing through the airways asking Nigerians to help her live. Here is a child the world is interested in. The non-profit organization is doing its best at that level to help her survive. Sunday Sun gathered that while the world was a short while away from screaming uhuru at the wonderful breakthrough, an unforeseen complication arose after over 14 hours of surgery. This followed inconsistencies in her medical history. Besides, her case marked a maiden attempt in paediatric neurosurgery. This, therefore, led to a further accumulation of medical bills totaling over US$500,000. This bill is spiraling every passing day OkikiJesu and her parents spend at the Johns Hopkins facility.
Specialists in the USA have identified the rare birth deformity which OkikiJesu is suffering, as Congenital Cranial Deficiency. Before now, she had been to several hospitals but not cured, but luck flashed on her pathway when GIPLC, which is based in Abuja took up her case. Sunday Sun learnt that since then, the organization has recorded significant success in efforts to get medical care for her. Within just a week, it raised about $234,000, an equivalent of N37 million through kind gestures from individuals and groups for her treatment at John Hopkins Hospital.
Kwajafa , just back from the United States, told Sunday Sun that “prior to the complications which arose, what made a determination of the full cost of Okiki’s surgery difficult is that in modern times, it is an extremely rare (perhaps singular) medical condition with no precedence to draw estimates from.
“This latter fact also means that it is equally difficult to tell what other medical complications may arise. An example are fluids that were retained in her cranial cavity which have posed an unforeseen challenge and may have led to a fatal infection.”
Kwajafa’s worry is that, “OkikiJesu may not be released from hospital until all outstanding bills have been paid. We and her parents are desirous of her condition being fully remedied before she leaves the hospital.” Against this backdrop, he said “We would like to appeal to the global public to support our cause in ensuring that OkikiJesu Olawuyi lives.”
Medical analysts believe she will be a living testimony if she recovers. According to GIPLC, her case remains the only one of its kind in the world.
When OkikiJesu’s father, Mr. Olawuyi spoke to Sunday Sun on telephone from John Hopkins Hospital, he expressed optimism that the girl was doing well and had remained in stable condition. He said “We thank God that she is responding positively to every operation performed on her. The doctors attending to her are also pleased with her present condition. They said she is a miracle child,because she is so far the only child in the world with this kind of health condition.
“They told us that there is no case of her type in medical history at their disposal the world over. There are three renowned doctors attending to OkikiJesu and the experience is so great.
“They keep assuring us that everything will be fine soon. We are also hoping positively and asking God to deliver our child.”
In a voice laden with emotion, he appealed to Nigerians to assist the child to live through their generous donations, pointing out that with money available, the baby was sure to survive.
“But our greatest challenge here is the cost of her treatment in the hospital. It’s indeed a very tough experience for us as parents.
The medical bill keeps increasing daily and has since been piling up. The treatment has over-shot the initial bill that was given to us before we came, because her condition exceeded their estimation.
The major issue is the hospital bill and not really our up-keep, that is, myself, my wife and our 15-month old baby, (Okiki’s younger sister). She is currently at the intensive care unit (ICU). This costs between $6,000 and $10,000 daily. Sometimes, two nurses are stationed to take care of her daily and it costs a lot of money.
“The good thing is that they are not taking any chance. They are all over her all the time. They are monitoring her regularly especially as she is an international patient. The bill is growing higher,” he lamented.
Okiki’s father further stated that for “every parent of a child with this critical health challenge, one only manages to sleep and to wake up hoping that the next day would be different. We have gone through this trauma all this while. Though, we have faith in God but every passing day, we are afraid for her life. Here in the hospital, as critical as her condition is , we are living and sharing her pains more so that the bills pile up every moment.
“ We appeal to Nigerians not to give up on Okiki. With their support, God will not disappoint us because she keeps improving daily. All the operations have been very critical. They took bones from her hand and leg to construct her skull. And she is doing fine.
“We appreciate efforts by all Nigerians including individuals, groups and corporate organizations. Everybody has been very supportive. We thank the Nigerian government, the National Assembly, and particularly the Speaker of the House of Representatives, Honourable Aminu Tambuwal and other kind-hearted people and members of our family for their support.
“On behalf of our daughter Okiki, and other children and parents in this condition, we urge government to institute a Special Trust Fund to take care of such rare and critical cases in the country. This fund should be adequately funded to cater for such critical needs.
“For us, Okiki’s parents, we are in this condition but hope that one day God will deliver us.
“In this situation, we repeat our appeal for quick intervention from the government and other Nigerians. Our wish here is that others should be spared this experience. We plead further with government to establish a fund to cater for such children in this condition.”
Your donations go directly to Okiki’s account with John Hopkins Medical International.
For more info call GIPLC on 08089693240, 08163183797, 08085101664
[Report from DENNIS MERNYI, Abuja Sunday Sun]