A nine-year-old girl just weeks away from a life-changing bone marrow transplant has been busy raising funds for charity.
Mara, a pupil at Oakwood Junior School in Alvaston, suffers from a rare bone marrow failure syndrome which affects her red blood cells.
As a result, she is often fatigued and requires blood transfusions every three weeks to manage her condition – called Diamond Blackfan Anaemia Syndrome (DBAS).
Mara is now preparing for a bone marrow transplant at Birmingham Children’s Hospital, which doctors hope will give her healthy bone marrow so she no longer needs transfusions.
The procedure, due to take place this month, will require Mara to undergo chemotherapy – and she has been told she will likely lose her hair during treatment.
Yet, in the positive spirit her teachers say is typical of her, Mara has not stopped thinking of others. In preparation for chemotherapy, she has gradually been cutting off her long hair, donating it to the Little Princess Trust, and has even dyed it a bright pink ahead of her procedure.
She has also been busy raising funds for DBAS UK, a charity she says has supported her and her family.
“I organised a cake sale at school and it got lots of support,” said Mara. “We raised about £380, and the school is helping to arrange for that to be presented to the charity.”
So committed is Mara to helping others that she says she dreams of working for DBAS UK when she is older, visiting schools to raise awareness of the condition.
“I would really like to go into schools when I’m older to help people understand the condition,” she said.
Mara has already begun educating her peers, giving a talk to her class about her diagnosis and allowing it to be mentioned in a school assembly to promote her cake sale.
And she has done all this while undergoing liver biopsies, blood transfusions, and other tests in preparation for her transplant.
Sheena Thiara, Mara’s class teacher at Oakwood Junior School, part of the Odyssey Collaborative Trust, has been supporting her throughout.
“Mara really is an inspiration,” said Mrs Thiara. “She is an example to everyone – not just pupils but staff too – of tremendous resilience and positivity. She always has a smile on her face and is always thinking of others, including her friends around her.”
Diagnosed with DBAS as a toddler, Mara has become used to carrying her medication at school. As her three-weekly transfusions approach, she can experience extreme tiredness and often needs to take breaks from schoolwork.
“I usually come into school on the morning of my transfusions,” said Mara, “but then I go to the hospital in Derby for the afternoon and stay there the rest of the day.”
Mrs Thiara added: “Mara can get very tired when it’s close to her transfusion date, but she is just so brave every step of the way. I really am in awe of her.”
Mara’s mum, Laura, is now preparing for her daughter’s 12-week hospital stay and a further 12-week recovery at home following the procedure. During this time, Mara will need to be isolated from potential infections, and only a limited number of visitors will be allowed.
Laura said the school has been a huge support to Mara over the years, particularly in the lead-up to the transplant.
“We would like to extend our heartfelt thanks to everyone at Oakwood for the incredible care and support you’ve given Mara over the past few months,” she said. “Knowing she was in such a safe and nurturing environment after having her central line inserted brought us great comfort during a difficult time. Despite the many days she had to miss for medical appointments, the school went above and beyond to ensure she still felt included and connected—whether it was through the thoughtful cake sale in support of DBAS, the class sports day, or the special party on her last day. The school’s kindness and commitment have meant the world to us and to Mara. Thank you, Team Oakwood, for being such a positive part of her journey.”
This article was written by Kirsty Green on behalf of Odyssey Collaborative Trust. Can we share your news and get you in the headlines too? Find out how we can help by getting in touch.
