PARENTS of a baby born with a rare disease are desperately trying to raise funds for a life-changing operation.
Mebal and Peter Akalya welcomed their son Silver in May but he was quickly diagnosed with Sickle Cell Anemia which means he produces crescent-shaped red blood cells. These blood cells do not live as long as healthy blood cells and can become stuck in blood vessels, putting two-month old Silver at risk of lung disease and stroke.
Silver’s parents are trying to raise £25,000 to fund a stem cell and bone marrow transplant.
To have the operation done on the NHS, Silver has to have developed other health complications such as problems with his lungs and kidneys as a result of the disease, weakened bones and problems receiving blood transfusions to help his anemia.
Mebal and Peter – who work as night carers at Scholar Mews Care Home in Stratford – would have to pay upwards of £200,000 for the NHS to do the operation rather than waiting until Silver met the criteria for it be done for free.
The couple, who hail from Uganda and who also have healthy two-year-old daughter, have decided to travel to India for Silver’s operation because better facilities are available to carry out the procedure – as Sickle Cell mainly affects people of African, Caribbean, Middle Eastern, Mediterranean and Asian origin, and the UK is not as geared up to treat the disease.
Peter also works as a customer service adviser at telemarketing company Sitel in the town and says it is not easy balancing two jobs and family life.
The 33 year-old told The Observer: “I reach a time when I feel really tired and want to not go to work but I want to show a good example to my children and not claim benefits.
“If we can raise the money I don’t know how we would thank everyone who helped us. We are really thankful to Scholars Mews because they have been there for us throughout and organised a family fun day to help raise money for the operation.
“£25,000 is a lot of money – for us it is beyond reach. Even if we sold everything we own, we wouldn’t make enough.”
Mebal, 32, added: “I am so thankful to Annabel – who started working at the care home when I was on maternity leave and got to know us because of Silver – for all her help to our family and with organising the fun day.
“Once Silver’s baby hemoglobin develop at three-months old, that is when he will start suffering the complications of Sickle Cell.
“The consultations we have had say the earlier the treatment the better. Once the patient starts to suffer complications, the more expensive the operation can become.”
Scholars Mews are holding a superhero-themed family fun day on July 31 to help the family raise money for Silver’s operation.
The care home will host a superhero fancy dress contest, face painting, a raffle, games, stalls and refreshments, from 2pm to 4.30pm.
And Avery Care Group – of which Scholars Mews is part of – have pledged to match whatever the fun day makes to help Mebal and Peter.
Visit www.crowdfunding.justgiving.com/mebal-nand to donate.