PROFILE OF FESTUS FAJEMILO

FOUNDATION

(CAC/IT/NO. 24051)

2011

BACKGROUND

The Festus Fajemilo Foundation, hereinafter referred to as FFF, is a non-governmental, non-ethnic, non-religious, not-for-profit organization established in 2006 and registered under Companies and Allied Matters Act 1, 1990 with registration number CAC/IT/NO.24051 with the main goal of seeking improved quality of life for children with Hydrocephalus (HC) and Spina Bifida (SB).

FFF was borne out of personal experience of Mr & Mrs Afolabi Fajemilo as a result of psychological trauma they went through in the first 2 years of their first son,Festus, due to ignorance, stigmatization, negative reaction and rejection from the society.

They were more devastated when it was said that little Festus would undergo brain surgery which may not provide a total cure but a life-long management. Parents summonedcourage when Festus was a year and two months and Festus had his first surgery in September 2005 and later had another procedure in August 2006 arising from complication from the first surgery.Since then, Festus has been improving with continuous rehabilitation.

Lack of information and policy, growing under inhuman treatment such as stigmatization, rejection, ostracism, malnutrition, lack of access to quality treatment & care, then eventual death of some affected children were the motivating factors that led to the concept of Festus Fajemilo Foundationin September 2006, by the parent of Festus. They felt if not for Festus, they would not have known what is called Hydrocephalus, hence, named the Foundation after him, but for the benefits of all children affected by these medical conditions in Nigeria.

VISION STATEMENT

A Nigeria where quality Hydrocephalus and Spina Bifida health care services is available, accessible and affordable, irrespective of age, gender, religion and socio-economic background.

MISSION STATEMENT

To advocate for prompt and quality Hydrocephalus and Spina Bifida health care treatment in Nigeria and promote respect for human right in health care delivery to patients, especially children/youngsters.

SHORT-TERM OBJECTIVES

  • Increasing public education on Hydrocephalus and Spina Bifida.
  • Improving access of children with Hydrocephalus and Spina Bifida to quality treatment, care and support.
  • Providing materials and lively-hood supports to families of children with Hydrocephalus and Spina Bifida.
  • Providing legal supports for children with Hydrocephalus and Spina Bifida.

LONG-TERM OBJECTIVES

  • To Research, Monitor and Document incident, prevalent and mortality rates of Hydrocephalus and Spina Bifida in Nigeria.
  • To advocate for policy formulation and legislative enactments in favour of children with Hydrocephalus and Spina Bifida in Nigeria.

PROBLEM STATEMENT

SPINA BIFIDA:

Spina Bifida is a neural tube defect, the most common group of birth defects. It affects the central nervous system (the brain and the nerves). It occurs in the womb of the mother within the first 25 days of pregnancy when the spinal cord fails to form properly. This results in impaired nerve signals between the brain and the rest of the body. Spina Bifida cannot be cured, though medical treatments now enable many people with Spina Bifida to live into old age and have a good quality of life.

Effects of spina bifida include:

  • Leg deformities (Club foot)
  • Lack/Limited sense of feeling
  • Bladder and/or bowel incontinence (not able to regulate their urine and faeces)
  • Hydrocephalus

HYDROCEPHALUS:

Hydrocephalus means “water on the brain”. This condition develops when there excessive accumulation of brain water (Cerebrospinal Fluid, CSF) within the cavity of the brain causing an increased pressure within the skull and on the surrounding tissue. As a result, the head of the infant will enlarge. If this pressure is longstanding, the brain will be damaged as well.

Hydrocephalus is treated with surgery, enabling the CSF to be drained from the brain. This can be done either by opening a new pathway within the brain or by placing a device, called a shunt, inside the head which regulates the pressure.

Effects of Hydrocephalus on the child:

Having Hydrocephalus affects children in different ways. This usually depends on the extent of the damage to the brain and how soon the child is operated upon. Some of the long term mental difficulties on the child may include:

  • Difficulty in concentrating on work or other tasks like reading /school work, especially for a long period of time (a child may benefit from having his or her tasks broken down into simple steps and the use of repetition)
  • Difficulty with short term memory (i.e. inability to remember events that happened minutes to days in the past)
  • Difficulty in reasoning and applying sound judgment
  • Difficulty with motivation and creativeness
  • Problems with the muscles and difficulty with moving the hands and feet due weak flexibility or stiff muscles
  • Blindness and deafness (in severe cases)
  • The child’s head may remain big making it difficult for the child to support his/her head or move around
  • The child may be sensitive to loud sounds, bright lights and generally gets scared easily

It is to be noted that not all these complications will occur in one child with Hydrocephalus and some of the complications may improve with time, with effective rehabilitation.

AGENCY DESCRIPTION

No. 15, Charity Road, Jorebet Plaza,

Ground Floor (Right Wing) , New Oko-Oba, Abule-Egba, Lagos.

P.O.Box 3905, Agege Post Office, Agege, Lagos.

Tel: (+234) 1-7651116, 8034095-714, 802-7855-297

E-mail: . Website:

OUR BOARD OF TRUSTEES

  • Ambassador Segun Olusola (mni, OFR) Founder, African Refugees Foundation(Chairman, BOT)
  • Dr. Joe Okei-Odumakin (Campaign for Democracy)
  • Chief Olufemi Ojo (Founder, APLPLAN)
  • Prof. (Mrs.) Abdul-kareem F.B. (Consultant Pathologist)
  • Wale Ogunade Esq.
  • Dr. Olufemi Bankole (Consultant Neurosurgeon)
  • Mrs. Adewumi Fajemilo (B.Sc, M.Sc)
  • Mr. Oladapo Famakinwa (HND)
  • Dr. Olufemi Idowu (Consultant Neurosurgeon)
  • Mr. Afolabi Fajemilo (B.Sc.)

STRUCTURE

FFF consists of the following structures:

-Board of Trustees

-Advisory Council

-Executive Committee

-Executive team that runs the day to day activities of the Foundation.

VOLUNTEERS

FFF is opened to the general public globally. Anyone can volunteer to provide sustainable services to children/youngsters affected by Hydrocephalusand Spina Bifida.

FUNDING AND SUPPORT

The Foundation sources fund for proposed projects from prospective donors locally and internationally. We request the goodwill of well meaning individuals, non government sectors, and government, locally and internationally to donate now and partner with us, so as to provide effective services and sustainable development to our target audience.

ACHIEVEMENTS

-SURGERY

  • Since 2008, the Foundation has provided free surgeries for over 20 (Twenty) children affected by Spina Bifida and/or Hydrocephalus. The surgery entails CT Scan, Laboratory investigations, Hospital admission, Drugs (Antibiotics), Consumables, and Shunt (Implant).

-THERAPY

  • FFF organizes periodic physiotherapy treatment for most children registered with the Foundation. This is because children with these conditions suffer poor motor coordination (Muscle weakness & stiffness) and mobility difficulties. We provide fund for specialist fees and transport assistance for parent/caregiver/ guardian. 37 (Thirty –Seven) children have benefited from this therapy treatment and more are to be enlisted.

-APPLIANCES

  • Many of the affected children who undergo therapy treatment have been provided assistive devices e.g. Wheel Chairs, Calipers, C.P. Chairs, Orthopaedic Shoes, Back Slab, Neck Collar, Walking frame etc to compliment the therapy and gain independence.

-AWARENESS CREATION PROGRAMMES

  • Seminar on Hydrocephalus and Spina Bifida - organized by FFF at Lagos State Universtity Teaching Hospital (LASUTH) Ikeja - June, 2008.
  • 1st annual awareness Lecture/Walk organized by FFF at Lagos State University Teaching Hospital (LASUTH); walk route - Awolowo Way to Lagos State House of Assembly - November, 2008.
  • 2nd annual awareness Lecture/Walk organized by FFF in conjunction with Women’s Optimum Development Foundation (WODEF) & Surulere Local Government at Surulere Local Government; Walk route - Masha road to National Stadium – December, 2009.
  • 3rd annual awareness Lecture/Walk organized by FFF at Lagos State University Teaching Hospital (LASUTH) Ikeja; Walk route - Mobolaji Bank Anthony Way – November, 2010.
  • Symposium on Hydrocephalus and Spina Bifida organized by FFF in conjunction with Neurosurgical Unit of Lagos University Teaching Hospital (LUTH) at LUTHIdi – Araba– June ,2011.
  • 4th Anniversary Lecture/Free Health Screening provided by Lagos State AIDS Control Agency (LSACA). The event also had 4 collaborating NGOs. Oorganization for Non-Formal education (ONEF), Community Child education and Development (COMED), Centre for Health Education and Development Communication (CHEDCOM), and Cerebral Palsy Centre.
  • Several Media Campaigns.

-EDUCATION

  • 17 children currently benefit from payment of school fees.

-SOCIAL INTEGRATION

  • As way of encouraging social integration and inclusion, FFF has been organizing end of year party where affected children enjoy lots of fun with siblings and other children. Surprisingly, many of the challenged children display abilities in disabilities.

-HOME BASED CARE

  • FFF visits each child registered with the Foundation at least once in 6 months at home/School. This is done to assess child’s acceptability in his/her environment by immediate family and the community. 37(Thirty – Seven) children are being visited.

-SUPPORT GROUP MEETING

  • Since January 2008, FFF holds monthly parents support group meeting at Lagos State University Teaching Hospital (LASUTH) Ikeja, where families share and exchange knowledge and build capacity to enable them manage their special children.

SUCCESS STORIES

  • 17 (Seventeen) affected children have gained admission into various mainstream private schools in Lagos State. This has been largely possible due to awareness creation initiative of the Foundation as nearly all of them have suffered rejection and stigmatization at the initial stage of seeking admission. Their performances in class work/activities are impressive and they have been competing favourably well with their peer groups.
  • Oluwaseun Osiewu (22 years): The mother of this youngster Oluwatoyin Maborukoje who leaves in College area of Ifako Ijaiye local government was passing within Ikeja when she saw us on our way to Lagos State House of Assembly during the awareness walk. She picked one of the FFF’s Flyers and later came to the office. She narrated her ordeal in caring for Oluwaseun who developed hydrocephalus at age 7 all alone as the father had abandoned the family because of Seun’s condition. Oluwaseun has not done surgery since then and this had worsened his condition which made him to drop out of school after good performance at WAEC. FFF intervened in the matter and Seun had his surgery which improved his condition drastically. He now walks around without being tired sat for last JAMB examination in June 2011 of which he scored good marks and waiting for admission into the University. Oluwaseun wants to read Computer Science in the University. He had also learnt Sign writing and he is very good at it.
  • Ojebiyi Oluwasegun was a 12 year old boy when he developed a tumor in the brain and this led to hydrocephalus. Due to ignorance and lack of prompt medical attention, he lost his sight in the process. As a result of this, he was withdrawn from school when he was to be promoted to J.S.S. 2. His family was ina state of confusion believing Segun would not achieve his educational dream. Mrs Ojebiyi (Segun’s Mother) who lives in Akowonjo area of Alimoso Local Government, Lagos State heard about the first FFF annual awareness walk, through which his surgery was done at Lagos University Teaching Hospital (LUTH); thank God it was a successful one. Segun was later registered under the FFF/Liliane Foundation partnership. With proper counseling and support from our partner, Segun is back to school at the NigerianSociety for the Blind, Oshodi where he will undergo a 2- year programme, learning the use of Braille machine and other vocational training skills before resuming to conventional education. After all, Segun’s dream of becoming a lawyer has been rekindled.

NETWORKS:

Nigeria Network of NGOs (NNNGOs) - 2009.

Association of Orphan & Vulnerable Children NGOs in Nigeria (AONN) – 2011

PARTNERSHIP:

Stitching Liliane Foundation, Netherlands – 2009

International Federation for Spina Bifida and Hydrocephalus, Belgium - 2011.

SOME SPONSORS:

-CORPORATE:

First Bank of Nig. Plc, DHL Nigeria, Integrated Microfinance Bank, Vitabiotics Nig. Ltd, Adler Nig. Ltd, Pharmatex Nig. Ltd, Johnsons Hotel, Yem-Kem Int’l, Promasidor Nig. Ltd (Cowbell), Emzor Pharmaceuticals, Viju Indusrties, Nigerian Aviation Handling Company (NAHCO), Vital Products, Crown Flour Mills (Cherie Noodles), European Soaps & Detergents, Kiomen Versus Nig. Ltd, DMT Mobile Toilet, Leadway Assurance Company Ltd.

-INSTITUTIONS:

Lagos State University Teaching Hospital (LASUTH) Ikeja, Straitgate Schools Magodo Lagos.

-GOVERNMENT:

Lagos State Ministry of Health.

-CHURCHES & CLUBS:

New Estate Baptist Church, Surulere, Foursquare Church Ojodu, Good News Baptist church Surulere, R.C.C.G. Hope Hall Surulere, Vivian L’amour Lions Club Ikeja, Route 16B Staff Bus, Mobil Producing Nigeria Unlimited.

INDIVIDUALS:

Numerous.