{"id":106226,"date":"2025-08-24T09:07:11","date_gmt":"2025-08-24T09:07:11","guid":{"rendered":"https:\/\/www.newsbeep.com\/us\/106226\/"},"modified":"2025-08-24T09:07:11","modified_gmt":"2025-08-24T09:07:11","slug":"calls-to-help-east-sussex-boy-with-rare-genetic-blood-disorder-2","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us\/106226\/","title":{"rendered":"Calls to help East Sussex boy with rare genetic blood disorder"},"content":{"rendered":"

Hsin-Yi Lo<\/p>\n

BBC News, South East<\/p>\n

\"FamilyFamily handout<\/p>\n

Woody has a rare, inherited condition which affects his red blood cells<\/p>\n

The mother of a toddler with a rare blood condition is urging others in similar positions to get a “ground-breaking” blood matching test so patients can have safer long-term care. <\/p>\n

Woody, aged 22 months, was diagnosed with Congenital Dyserythropoietic Anaemia (CDA) Type 1, which affects about one to five out of every million babies, according to rare disease resource Orphanet.<\/p>\n

The condition means the DNA in Woody’s red blood cells is disordered and he needs blood transfusions every four weeks to stay alive.<\/p>\n

Woody’s mother, Polly, 35, who lives in Robertsbridge, said it was “really frightening” when he was born as he was “poorly, pale and needed ventilation breaths”.<\/p>\n

“The first few days were very critical for Woody,” she said.<\/p>\n

“He was extremely unwell and nobody knew the cause for his haemolytic anaemia.”<\/p>\n

\"FamilyFamily handout<\/p>\n

Woody was born at 34 weeks with extremely low haemoglobin levels<\/p>\n

Concerns about Woody’s health began before birth, with 20-week prenatal scans showing abnormal development. <\/p>\n

He was born prematurely at 34 weeks with haemoglobin levels about one quarter of what they should have been.<\/p>\n

The NHS Blood and Transfusion (NHSBT) explained that Woody’s condition meant his chromosomes were not organised within the nucleus of his cells. <\/p>\n

The chromosomes contain all of the DNA in a cell and when disorganised, the cells do not develop and divide properly. <\/p>\n

This has meant that Woody’s immature red blood cells either die in the bone marrow or do not survive for very long.<\/p>\n

\"FamilyFamily handout<\/p>\n

Woody’s mother, Polly, said he was completely reliant on blood donors<\/p>\n

Polly said: “Woody has been on the chronic transfusion pathway for more than a year. He’s completely reliant on blood donors. <\/p>\n

“Every four weeks he gets about 140mls of red blood cells to boost his haemoglobin.”<\/p>\n

NHSBT said despite what Woody was going through, he was a “resilient, happy and energetic toddler” who loved going to the park, swings and riding his bike. <\/p>\n

Woody’s family are supporting NHSBT’s appeal for patients with similar rare conditions to get the new NHS genetic extended blood group testing performed.<\/p>\n

NHSBT said the “ground-breaking” test uses genetics to identify rarer blood groups, known as “extended blood groups”.<\/p>\n

Kate Downes, head of genomics at NHSBT, said: “This enables comprehensive testing to be rolled out for people with sickle cell, thalassaemia, and transfusion-dependant, rare inherited anaemias.<\/p>\n

She added: “We want everyone eligible, like Woody, to be tested so they can get better matched blood.<\/p>\n

“We also need more people to donate, so we can supply the matched lifesaving blood to Woody and people like him.”<\/p>\n

Polly said: “If it wasn’t for blood donors, Woody would not be alive.”<\/p>\n","protected":false},"excerpt":{"rendered":"Hsin-Yi Lo BBC News, South East Family handout Woody has a rare, inherited condition which affects his red…\n","protected":false},"author":2,"featured_media":106227,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[50],"tags":[200,79],"class_list":["post-106226","post","type-post","status-publish","format-standard","has-post-thumbnail","category-genetics","tag-genetics","tag-science"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/106226","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/comments?post=106226"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/106226\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/106227"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=106226"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=106226"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=106226"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}