We just returned from Kenya a few weeks ago where we have deep ties and where amazing work is being done to help underprivileged children. We were just made aware that this beautiful boy, Fortune Emmanuel, has been diagnosed with a rare disease, but could have the chance of a full life if we can raise the money for a complicated cardiac surgery. The MEAK Foundation were able to secure a hospital in the UK to perform the operation at reduced expense, including the Visas, Medical Permits and flights for both Fortune and his mother. The total cost for all of this is £35,000 to save his life. We all have a lot of expenses and responsibilities, but I’m hoping that you can give whatever amount feels right to help save this little boy.
We are the only hope that he has!
Fortune Emmanuel Omanyo is 2 years and 2 months old and he lives with his mother and father in the Kibera slum in Nairobi. Kibera is the largest slum in the whole of Africa. Living conditions are poor with only basic housing and sanitation facilities, limited running water and electricity.
His family are originally from Kakamega in Western Kenya, near Lake Victoria and the Ugandan border. He was born in Bahati hospital, in the Nairobi province. After birth, he was referred to Kenyatta National Hospital in Nairobi, Nairobi's largest public hospital. It would have been immediately obvious that there was something tragically wrong, but sadly he was not treated or offered surgery to correct any of the defects with his abdomen.
Fortune was born with his internal organs located outside his thorax, covered only with a thin skin, not by the abdominal muscles or the bony, protective structures of the thorax, such as the ribs. This abnormality is called Pentalogy of Cantrell. It is a very rare childhood defect that involves five separate defects. Namely;
• Diaphragmatic hernia;
• Sternal cleft (the sternum is split in two, therefore not holding the internal organs inside)
• Ectopia cordis (where the heart is located outside the chest wall)
• Omphalacele (resulting from a defect in the muscles of the abdominal wall, where some of the internal organs such as the liver, diaphragm and some of the intestines are located in a sac and then surrounded by skin outside the abdomen); and an
• Intracardiac defect (in Fortune’s case, Tetralogy of Fallot and total anomalous pulmonary venous drainage).
Amazingly, Fortune seems to have the "survival" gene (as we like to call it!) He could have easily succumbed to infection or complications from his heart defect at any stage of his little life. Even a simple childhood fall could have proved fatal if he had landed on his chest. Luckily for him, he has grown remarkably well considering his conditions and he is a lovely little boy.
In November 2013, he presented to the Silanga clinic (in the Kibera slum) with gastroenteritis and pneumonia, where his Pentalogy was also documented. He was then referred to the Kenyatta National Hospital for investigation. Luckily, the MEAK heart team were operating there at the time and they saw Fortune in the cardiac clinic. An echocardiogram was performed and his cardiac diagnosis was made. The heart team have since liaised with the Doctors at the clinic in Kibera to try and help Emmanuel. Fundraising was performed to allow him to have a CT scan to establish the anatomy of the other internal organs in the omphalacele. Together with other medical teams (such as gastroenterology) a plan for surgery was formulated where the organs could be placed back in the thorax and the heart defect repaired.
Professor David Anderson, MEAK heart surgeon and Director of Paediatric Cardiac surgery at Guy's and St Thomas' NHS Trust in London is confident that Fortune has an extremely good chance of survival from surgery (without it, sadly, his future would be rather bleak). However, he may need more than one procedure to correct the defects. In addition, he may require a long time in intensive care and on the post-operative ward and he will require specialist medical intervention on a longer term basis than most of our heart children, as his defects are so complicated. It is for these reasons that we would like to operate on Fortune in the UK to ensure that he has the greatest chance of survival.
Obviously, surgery like this in the UK is expensive. We sincerely ask for any help in getting Fortune here so that we may correct his disfiguring and life-threatening Pentalogy enabling him to go on and live a full and happy life.
With heartfelt thanks,
For more details of what we do, please visit www.meak.org