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 pseudarthrosis 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”. In fact, Tina really hadn’t had many positive experiences outside her family home; with stares, negative or spiritual comments and discrimination, Tina sadly has very low confidence.

Tina lives in Takoradi with her very supportive and loving family, her mum (who also has NF) and 4 siblings (2 of whom have NF). A wonderful couple, called John and Lieteke, met Tina in Takoradi around 18 months ago and supported Tina to access medical care. In November, Tina received debulking surgery for her plexiform tumour at Komfo Anokye Teaching Hospital in Kumasi, whilst living at FFG centre and being cared for by her older sister Benedicta. Unfortunately, during the recovery period a lot of the tumour has grown back and the medical professionals in Ghana are uncertain what would be the next step for her care.

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 or complications. Working alongside CTT and John and Lieteke we are currently exploring options of medical care abroad.

Tina has begun private tutoring so that she can begin to catch up with educational goals. Since starting tutoring, Tina is so eager to learn and regularly asks for more work or homework, it is incredible to see a child who has been deprived of education really love learning and begin to learn so fast. In the future, we aim to start Tina at school – possibly a vision specialist school if Tina’s vision deteriorates or private school who we would support to understand, include and accept Tina. We want to focus on creating social opportunities for Tina in her community 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. And it is surprising how much English she knows but didn’t previously feel confident to speak!! A massive highlight has been Tina's 12th Birthday – it was made so incredible by so many CTT families sending birthday cards, pictures and a bracelet. We went swimming with Tina, her mum, her sister Benedicta and a few friends she had made over the last month in Kumasi, not only was it incredible to see Tina splashing around and calling out to her friends, but also the looks in her family’s eyes at seeing her be a typical child.

Now that Tina has returned to Takoradi to live with her family, you know longer find her indoors. She is often sitting out the front of her home with her mother or even playing with the children in the neighbourhood.

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.