I am sure some of you read our previous blog about Tina – a young girl from Takoradi who is diagnosed with Neurofibromatosis, type 1.
I cannot believe it was just over a year ago that we received a phone call about a girl who had received debulking surgery in Kumasi and was now being treated poorly by the landlord of the small place where she and her sister were staying during her recovery period. We of course quickly invited her to stay at the centre – she had a bedroom, a classroom and a therapy room full of toys, books and lots of things she was free to explore. The area surrounding the FFG centre know many of our children and families who visit and accepted Tina quickly, she was able to wonder around safely and go to the shops as she pleased. Following this one phone call we were so grateful to meet Tina & her family and John & Lieteke (the family supporting Tina) and a very exciting journey begun.
Tina was a very shy girl who spoke no English and hid behind her big sister in most situations. She had never been to school due to the stigma those with disabilities face in Ghana and had experienced many negative stares and comments so you can imagine why she would shy away from others. I cannot believe the difference we have seen over the year in Tina. She has achieved so much, it has not always been an easy journey, but Tina has worked so hard and has been surrounded by patient and caring people offering her support and encouragement.
When Tina moved home to Takoradi, Covid-19 prevented her from accessing tutoring or social interaction and she became a little more reserved again. When she finally was able to start her tutoring with Rosemary (her very wonderful tutor) we once again faced a barrier when the school who offered us a classroom asked Tina to cover her face when she came, which we would not endorse. We settled for Tina studying at Rosemary’s, which in the end turned out to be even better as Tina is now great friends with Rosemary’s daughter, they love playing games and watching cartoons together, whilst also developing Tina’s English.
Tina had some trouble settling into the tutoring routine and found it hard to concentrate, she had never before been asked to persevere and commonly individuals with NF can also experience learning and memory difficulties. However, over the past few months this has all changed, Tina loves her lessons and has been working hard and has excelled with her learning. She is now counting, adding, and even doing times tables and multiplication!! She has learnt her phonics sounds and letters and is not only reading words, but also sentences and short stories!!! WOW!!! Tina, we are all so proud of you!
Childhood Tumour Trust, who sponsor Tina through Family First, have been invaluable in enabling this. Many kind families donated books to send to Tina for a Christmas present – she is working her way through them one by one in her lessons. Seeing the pictures alongside the story allows her to put meaning to what she is reading. We were able to get some beautiful stories which are inclusive of Tina’s culture – including ‘Ghanaian Goldilocks’, ‘A pot of Jollof’ and many more. Some children from UK who also have NF wrote Tina lovely and personal Christmas cards and sent her presents – a beautiful fairy and bracelet – the first things that Tina had owned herself and she swelled with happiness.
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Tina is not only forming friends in Ghana, but also all around the world. Knowing she is not alone and not the only one is an important feeling for a child. Tina has been able to join in with virtual cooking lessons and a virtual Christmas party with other children with NF and every day Tina is becoming more confident.
From all around the world - Lieteke and John and FFG in Ghana, CTT and Rosie in the UK, and NF specialists in Italy - all fighting to get Tina the best care. We are currently exploring both surgical and pharmaceutical care options in Italy for Tina's plexiform tumour. Of course things are slower than typical at the moment with Covid, but we are hopeful for an exciting 2021 for Tina.
Furthermore, Tina's story (as well as Paul's - Paul | Familyfirstghana) has inspired a dream of improving the care of individuals with Neurofibromatosis in Ghana. CTT has recently sponsored 3 surgeons, a nurse who also has NF, and Lieteke (who will share the information with Tina's family and teacher) to attend the European Neurofibromatosis Conference 2020.
Feedback from International NF Conference:
"Joining as a plastic surgeon from Ghana, it was amazing to see and hear about all the research that has been done and continues to be done with Neurofibromatosis. It remains a challenge managing such conditions to us in Ghana. I also learnt a lot about new innovations with regards to management of this condition. I hope that soon we can also start to carry out similar studies and research to improve the lives of our patients that present to us with Neurofibromatosis. Thanks a lot for the opportunity and I look forward to taking part in more of such conferences."
We hope this will be the start of more to come and that the information can be used to better the lives of individuals with NF in Ghana, Africa.