Tina

Tina is 12 years old and is a very sweet, quiet little girl! Tina is diagnosed with Neurofibromatosis type 1, with a plexiform tumour affecting her face, causing vision loss in her right eye. Tina also has congenital pseudoarthrosis of the left tibia, meaning she has a slight bend to her lower leg. Unfortunately, due to the stigma associated with disabilities and medical needs in Ghana, Tina has never been allowed to go to school as she may “scare the other children”.

Tina lives with her loving family in Takoradi. Around 18 months ago a wonderful couple, called John and Lieteke, met Tina and supported her to get medical care in Kumasi and in November she received debulking surgery at Komfo Anokye Teaching Hospital. During recovery, Tina stayed at the FFG centre but unfortunately most of the tumour has grown back and the medical professionals in Ghana are uncertain what the next steps of care would be for Tina.

Thankfully, we are supported by Childhood Tumour Trust (CTT), a UK based Neurofibromatosis charity, who have not only started to sponsor Tina but have also advised on other health complications possibly linked to NF. We have started medical assessment at KATH and have started Tina on a daily Vitamin D supplement to prevent further bone abnormalities. Working with CTT, John and Lieteke we are currently exploring long term options of medical care abroad.

Tina has started private tutoring so that she can begin to catch up with educational goals, with the future aim to start Tina at school – possibly a vision specialist school if her vision deteriorates or private school who we would support to understand, include and accept her. We want to focus on creating social opportunities for Tina with peers the same age as her to develop her self-esteem and confidence. Through educating Tina’s community, we hope we can create an inclusive environment for her!!

Tina has already started to grow in confidence, and we have begun to see her smiling, chatting and laughing. When we first met Tina she shied away from others or would look to her older sister to answer for her when asked a question – she now seeks out children to play with when we have our families visit the centre and is keen to play at the park or swimming pool with others. We are excited to continue to work with CTT and all those in Ghana who care for Tina to make a difference in her life. We hope through medical care, education, inclusion and acceptance Tina can live a happy and fulfilling life with her family in Ghana.

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