This is Jason, my first cousin on my mother’s side, with his beautiful Trinidadian based family; Coletta his wife and their young girls Cayla 8 yrs and Joanna 7 yrs.
At just 1 years old Joanna was diagnosed with beta thalassemia major. It is a severe blood disorder which reduces the production of haemoglobin, the iron-containing protein in red blood cells that carries oxygen to cells throughout the body.
Joanna is an extremely intelligent, loving and talented child who enjoys dancing, doing puzzles, playing with friends and older sister Cayla. However, her condition often prevents her from fully participating in some activities as exhaustion steps in due to the lack of oxygen.
In order to maintain her young life, Joanna has to receive blood transfusions every 2-4 weeks. The frequency of these transfusion treatments negatively affects her participation and attendance to school. Though resilient, Joanna would often cry and ask, ‘When will blood transfusions stop?”
Sadly, she will need to continue receiving blood transfusions for the rest of her life and has already received just under 80 of them. However prolonged blood transfusion treatment can cause many health complications, leading to loss of life at a young age.
A Bone Marrow Transplant and/or Gene Therapy is the only approved cure for patients with beta thalassemia major.
Joanna has been accepted into The Bambino Gesu, Children’s Hospital in Rome, Italy (the country with the highest success rate) to receive this life-saving treatment. This is fantastic news!
“Research on successful bone marrow transplants/gene therapy have indicated that the younger the patient, the greater the chances are for success. My wife and I have been tested and we are both a match! Which is great as we don’t need to rely on finding an unrelated donor for Joanna.” - Jason
This fundraiser has been set up to make it possible for Joanna to receive this treatment. Successful treatment will allow her to enjoy the best quality of life and pursue all her dreams.
Funds raised on this platform will be sent to the The Bambino Gesu, Children’s Hospital to cover all costs related to the Bone Marrow Transplant and/or Gene Therapy treatment.
Help us to reach our goal by DECEMBER 31st 2019
The family is extremely grateful that Joanna’s fundraising appeal is also being supported by UK based blood cancer charity, ACLT (African Caribbean Leukaemia Trust).
ACLT are committed to supporting Joanna and her parents by sharing her story on their platform
On behalf of my cousin and his family, I want to say a huge THANK YOU! to those that have already donated.
We have a long way to go, please share and help spread the word.
Big love, Denise : )
Follow updates on Instagram @givetocurejoanna