"I just want to be accepted" - Tina, aged 13

The Childhood Tumour Trust (CTT), Family First Ghana and Linfa Neurofibromatosi are working together to urgently raise £10,000 to help Tina, a shy and intelligent 13-year-old girl living in Ghana. Tina has Neurofibromatosis type 1 (NF1), a genetic condition which has caused a large tumour on her face and she is likely to lose her sight completely without specialist treatment. We are fundraising for Tina to access medical care in Italy to save her vision and improve her quality of life in Ghana. There are limited healthcare options in Ghana for children like Tina, our campaign will have wider benefits for Ghana's healthcare system and others living with NF1 in Africa.

 

Tina is a very brave girl and has learnt to cope with her challenges. The stigma of her condition has meant that she has never been allowed to go to school, as she "scares" the other children. As she cannot go to school, she is tutored at home through the sponsorship of CTT. She loves learning and will phone her teacher to ask when she can come for lessons again! After just 18 months of being tutored, she is now confident with mathematics, reading and writing, and speaking English.

CTT has been supporting Tina through online art classes with other youngsters with NF1 from around the world. She now realises that she is not alone and her self-confidence has soared. Tina has begun to invite other children in her community to join these classes and has made lots of friends. We hope that the local interest in these sessions will eventually remove the stigma of her disfigurement - and ultimately allow her integrate into a local school where she can socialise and learn with her peers.

Without treatment, Tina cannot live to her full potential.

Tina has received basic care in Ghana. Unfortunately, the specialist knowledge is not sufficient to help Tina further. The Ghanaian doctors are passionate to learn more about NF1. A specialist surgeon, Dr Zainab Schumacher, from Ghana is willing to travel with Tina to Italy. She will learn how to care for Tina and will gain as much training as possible from the Italian NF1 specialists to bring back to West Africa.

 

We are a group of passionate individuals and NGOs from Ghana, Italy, the UK, and the Netherlands who have come together to help Tina.

 

We are fundraising for Tina to travel with her mother and the surgeon to Bambin Gesu’ Paediatric Hospital in Rome. Here she will get a complete medical examination and comprehensive therapeutic plan, which could be surgery or a  revolutionary drug which can slow tumour growth and may even shrink it. Other complications that Tina experiences due to the NF1, such as pseudarthrosis of her leg, will also be assessed. 

 

This special campaign for Tina will have positive implications for Ghana’s healthcare system by building a bridge between the Italian NF specialists and the Ghanaian medical professionals. We hope that Ghana can develop a multidisciplinary team supporting not only Tina, but also many others living with NF1.

By saving Tina's vision, shrinking her tumour, raising awareness and reducing stigma - it will allow Tina and others to be accepted and live a meaningful life! 

Thank you for reading our appeal for funds to support Tina and others in West Africa with NF1 - please share our story and help us in our mission!

 

Childhood Tumour Trust

The Childhood Tumour trust is a UK registered charity that supports families with NF1. They share information, raise awareness and bring families together, wherever they live in the world. Registered Charity Number: 1165777

 

Family First Ghana

Family First Ghana is a local NGO in Ghana supporting families who have children with disabilities and complex medical needs in Ghana. By improving access to medical care, education and therapy and through raising awareness we believe that families can go from surviving to thriving.

 

Linfa Neurofibromatosi

Let's not stop, let's stop neurofibromatosis!