Family’s plea for blood donors as son battles rare illness (From York Press)

Family’s plea for blood donors as son battles Diamond Blackfan anaemia

9:11am Monday 18th January 2010 in News By Richard Harris

EVERY five weeks William Rhodes needs a life-saving blood transfusion as he battles a rare disease.

Now the one-year-old’s family is pleading for people to donate blood to help William, and the thousands of others who rely on transfusions.

The toddler, who is the son of former York City footballer Ben Rhodes and his wife, Caroline, suffers from Diamond Blackfan anaemia, a condition so rare that it affects only about 120 people in the UK and 700 worldwide.

Ben, 26, of Hamilton Drive, Holgate, York, said: “When he was born we nearly lost him as his organs basically shut down.

“They brought him round, but we had a difficult ten days in the special care baby unit.”

William was given a blood transfusion and everything seemed fine.

But at his first check-up problems came to light.

Ben said: “We knew he was pale but they rushed him straight into York. They couldn’t find anything wrong so we went to Leeds. He had a test on his bone marrow, and they came up with Diamond Blackfan anaemia.”

The condition means William’s bone marrow does not produce enough red blood cells, which carry oxygen around the body, and it often leaves sufferers with a limited lifespan. To combat the disease, he has had to endure blood transfusions every five weeks for the past year to top up his levels of red blood cells. When they fall below a certain level, he becomes lethargic and pale.

Ben and Caroline now hope a course of steroids will kickstart little William’s bone marrow into producing the red blood cells he needs. If not, the young battler faces a bone marrow transplant.

The other problem comes with the blood transfusions as there will come a time when his body is unable to cope with the amount of iron in his bloodstream, meaning he may have to spend hours on a machine each day to remove the excess, otherwise his internal organs could shut down.

Ben and Caroline are now urging people to give blood regularly and are also to embark on fundraising to aid research into Diamond Blackfan anaemia.

Ben, who also played for Harrogate Town and Pickering Town in his football career, underwent a kidney and pancreas transplant after contracting a kidney disease and diabetes.

He said: “It’s vital that people give blood as if they didn’t, William would not be alive.

“It’s important not just for him but for many others. Women who give birth sometimes need blood so it’s vital that everyone becomes a donor, particularly those with rarer blood groups."

Diamond Blackfan anaemia - A rare condition

Diamond Blackfan anaemia (DBA) was first documented by Dr Louis Diamond and Dr Kenneth Blackfan and means the bone marrow does not produce enough red blood cells.

The cause is unknown, but in a quarter of cases there is a genetic problem. Sufferers can have various symptoms and in some cases have malformed hands or cleft palates.

They tend to tire easily, may have difficulty breathing and suffer heart murmurs as the heart works harder to pump oxygen around the body.