People who meet two-year-old Shahera Khan adore her.
The young girl is described as wonderful, funny and calm.
Sadly, however, her life is not that of a normal girl her age. Shahera, who lives in Croydon with her mum, dad and five-year-old brother, suffers with a very rare immunodeficiency disease.
Its a fault in her immune system and means Shahera is unable to produce enough white blood cells, making her susceptible to infections. A worst case scenario would be she sustains a serious bacterial infection which could prove fatal.
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“Shahera is currently taking medication to protect her against serious bacterial infections and she has immunoglobulin transfusions every week,” said her mum, Amina.
“At the moment she is doing okay but shes getting side effects from the medication.”
Shaheras family have been told a stem cell transplant is her best chance of leading a normal life. Doctors will give her new, healthy stem cells via the bloodstream, where they begin to grow and create healthy red blood cells, white blood cells and platelets.
But Shahera needs a stem cell donor. Nobody in her family is a genetic match, so the family is working with blood cancer charity Anthony Nolan to raise awareness of the stem cell donor register.
The search is made more difficult due to her Bangladeshi heritage. Data shows patients like Shahera, from a black, Asian and minority ethnic background, have a 20 per cent chance of finding the best possible stem cell donor match, compared to 69 per cent for people with white, European heritage.
Amina said: “We need to find Shahera a donor as soon as possible.
“We want to raise awareness in the Asian, and particularly Bangladeshi community so people come forward – not only to help Shahera but for anyone who needs a donor.
“Its shocking that there is no match for Shahera and other people from Asian communities.
“With Shaheras condition the doctors would like to do the transplant as soon as possible. Theyve given us a couple of months to find a donor and suggested spring or summer next year for the transplant.”
Shahera has regular appointments at Great Ormond Street Hospital and waiting for a stem cell donor is a “nerve wracking” process, Amina admitted.
“Shahera is wonderful. She touches everybody she meets; from family and friends to the people she meets in the hospital,” Amina said.
“Shes very calm and everyone just loves her, shes funny too. To look at her, you wouldnt believe she was ill but what is going on inside is a totally different story.
“We dont want her to miss out on anything. She should be starting nursery this September, but we dont know what will happen because of her treatment.
“Were a happy family unit. My husband and I both work and we slot Shaheras appointments in around family life.
“Its nerve wrecking and upsetting, waiting to find a donor. It feels like a long process. Its not easy, we have our bad days as well as good days, but all we can do is look forward, and do everything we can to find Shahera a donor.”
So far no match has been found but the family are hoping blood cancer charity Anthony Nolan can help raise awareness of the stem cell donor register.
Sarah Rogers, register development manager at Anthony Nolan, said: “Little Shahera wants to go to nursery, learn and make more friends just like other toddlers across the UK. For this to happen she needs a stranger to donate their stem cells.
“If youre aged 16-30 you can join the register online and well send you a cheek swab in the post.
“If youre found to be a match for a patient, you could donate your stem cells and give hope to families like Shaheras. Your support could help us give a patient, their family and their friends a second chance of life.”
People aged 16-30 who are in good general health can find out more, and join the Anthony Nolan register at www.anthonynolan.org/saveourshahera.
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