26 Apr Tevita’s journey to joy
When only weeks old, Tevita Afemui was diagnosed with Neurofibromatosis Type 1 (NF1). It is the most common form of NF, affecting the bodies nerves and occasionally, tumours develop in the brain or on the spinal cord.
Tevita’s case however, is quite rare as the tumour growths are pressing on his airways and heart valves. These are causing blockages and aren’t allowing oxygen to travel through. Doctors have had to operate and insert tubes into breathing airways just so he can breathe.
Tevita’s latest MRI’s have shown an increase in the number of tumours he has which has prompted his doctors to try a treatment no child has ever received before. They are desperate for it to work because this appears to be the last option to shrink and hopefully stop the tumours from growing in this brave two year olds body.
Like any two year old, Tevita loves to play outside and does not like being confined inside. The problem is, he is only able to be off his breathing support machine for very short periods of time. Leaving the hospital grounds, even for a small trip anywhere, would be a dream come true for Tevita and his family – but it can’t be done without the proper medical equipment.
When Tevita was first diagnosed, his mother Mele left her paid employment for the full time job of being by Tevita’s side 24/7. This has meant Tevita’s father, Pilimai has been the sole income earner for the family. His income alone is not enough to cover the costs of the equipment necessary to show Tevita life outside of hospital walls.
- a specialised paediatric stroller to carry Tevita and his necessary breathing support system costing over $7000
- a back-up breathing support machine costing between $2000 and $5000 and
- a reliable vehicle and the funds to modify it to fit Tevita’s breathing support machines.
There has already been some fundraising for Tevita and his family but have not yet raised enough to take this spirited two year old on a trip outside the hospital.
The next few months will be critical for Tevita. Doctors don’t know how much time he has left. Please give generously and grant this small boy the best Christmas present ever, a trip to see the Christmas lights around town!
ProFruit and The Sydney Markets Foundation are proudly supporting Tevita in this heartwarming journey.