Joe Redmond is a little boy who has 'magic blood.' Aged just 3, Joe has undergone more operations and treatment than most of us will in our entire lives. At just six weeks old, Joe was diagnosed with 'Diamond Blackfan Anaemia' (DBA) a rare bone marrow disorder that only affects only a few hundred people in the world.
DBA is a blood condition caused by a failure within the bone marrow, specifically an inability to produce red blood cells which are necessary for transporting oxygen around the body. Regular blood transfusions can bring red blood cell levels up to an acceptable level, but this also requires nightly medication to make sure the iron level in the body is correct. A bone marrow transplant is the best way for DBA suffers to restore red blood cell production completely.
Luckily, Joe has a very special sister, Holly, who has given him the gift of life - her magic blood. Holly, aged 6, was a match for Joe's bone marrow and in early January she joined Joe in the Royal Manchester Children's Hospital for the transplant. The operation went well and both Joe and Holly are fine, but the battle really begins now for Joe.
A bone marrow transplant can help restore the bone marrows ability to make red blood cells. The donated stem cells must closely match the patient's Human Leukocyte Antigen (HLA) type, special proteins found on most cells in the body. Siblings are the most likely match with a 25% chance and Holly's HLA matched perfectly.
To look at Joe, a smiley, happy little boy, full of life, it's hard to see that his body is going through such turmoil. But currently, a very brave little boy is sitting in isolation in the Royal Manchester Children's Hospital whilst his new bone marrow is engrafted and begins to produce red blood cells.
Prior to the transplant, Joe needed chemotherapy to kill off his immune system and defective bone marrow that would prevent Joe's body from rejecting holly's blood. In true Joe style, he named his Hickman line insertion his two new 'wigglies'; "Lightening and Finn."
Joe and his family, parents Peter and Tricia and big sister Holly all live in Jersey. However, during the next year, Joe's treatment and recovery in isolation means that the family will not see each other much. With Peter and Tricia alternating shifts at the hospital in Manchester, whilst Holly remains at school, time together is precious. Holly cannot see Joe now until his treatment is complete, but the two enjoy talking together daily.
To get to this stage hasn't been easy for the Redmond family. Joe's parents Peter and Tricia have tirelessly fundraised to be able to support their family. Upon finding out that Joe needed treatment off the island and the current means assessment testing for funding means that bearing the financial burden was left with Peter and Tricia. During the last year, islanders in Jersey have come together to raise over £51,000 to support them during Joe's treatment. Blue Islands are providing the family with flights to and from Manchester throughout this time.
This is the story of a brave little boy and a family pulling together to fight for his survival. Peter, Tricia, Holly and Joe have a tough year ahead of them, but the chances look good. All the very best to the Redmond family and Joe, the little boy with the magic blood.
Diamond Blackfan Anaemia is a blood condition caused by a failure within the bone marrow. It is characterized by an inability to produce red blood cells (necessary to transport oxygen around the body).
It is typically diagnosed before the patients 1st birthday with the majority of cases found before 4 months old. The condition is extremely rare, affecting approximately 105 people in the UK and only 600-700 world-wide.
The exact cause is not clear, but the problem seems to be a fault in one of the early steps of red blood cell production. In up to 25 per cent of affected children there is a fault within a gene called RPS19 (short for 'small ribosomal protein 19'). Research is taking place to try to identify the genes that are damaged in the other 75 per cent, with some promising leads, but no definite answers as yet.
The condition is named after the two doctors who first documented cases in the 1930's. Dr. Louis Diamond (the founder of the Haematology/Oncology branch at Children's Hospital in Boston, USA) and Dr. Kenneth D. Blackfan (the Chief of the Paediatric Department).
Peter and Tricia are eternally grateful for the support given to them by their friends family and islanders in Jersey. The fundraising job has been done for the Redmonds, but there are still other local families who find themselves in a similar situation. The Redmond's wholly support the work of The Grace Crocker Family Support Foundation, a charity set up to financially support families with sick children who need treatment away from Jersey. The Grace Crocker Family Support Foundation can be contacted by emailing thegracecrockerfoundation@hotmail.co.uk
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