Wolf Hirschhorn Syndrome
January 18, 2012 by staff
Wolf Hirschhorn Syndrome, At just three years old Mia Rivera has not many months to live, But doctors refuse to carry out the vital kidney transplant she needs to survive- because she is disabled. The toddler has Wolf-Hirschhorn syndrome, a genetic disorder that causes mental and physical developmental delays. Many sufferers do not live beyond the age of two.
Her family stand willing to donate their own organs. But when Mia’s mother went to their local hospital in Philadelphia last week to discuss the transplant, doctors told her they will not recommend transplantation for the little girl. Chrissy Rivera told ABC News she initially ‘thought we were just finding out how a transplant works and how we could be a donor.’
‘But then, I was told we couldn’t because she was mentally retarded,’ she said. ‘Those were the exact words on a piece of paper.’
Medical staff also expressed concerns about Mia’s ability to cope with taking medication for the rest of her life, and especially when her family were no longer around to look after her, Rivera claims.
If true Mia’s treatment would be reminiscent of attitudes in the 1960s, when Downs Syndrome children with physical problems were frequently allowed to die.
‘Everyone should be treated equally,’ Rivera told ABC News. ‘This is outrageous.’
Mia who has two brothers, aged 11 and 6 cannot walk or talk and has a gastrointestinal tube because she cannot eat by herself. ‘
‘But she smiles and plays and recognizes us and loves her brothers,’ said Rivera. ‘They love to play with her.’
Rivera believes doctors’ preconceptions about Wolf-Hirschhorn syndrome are ‘pretty dated.’
‘There are people in their sixties and plenty of them in young adulthood in their 20s, 30s and 40s,’ she said.
‘Any mother wants the best for her child and will do whatever it takes to get it,’ said Rivera, ‘
Mia isn’t to blame for this. She didn’t want ask for this syndrome and all we ask for is the right to fair medical treatment.’
‘The Children’s Hospital of Philadelphia said it ‘does not disqualify potential transplant candidates on the basis of intellectual abilities,’ but refused to comment on the specific case.
‘We feel and understand your frustration, but we are unable to comment publicly on individual cases.
After the distraught mother wrote a blog piece about her daughter’s tragic situation last week.
And after reading it, Sunday Stilwell, a Maryland mother with two autistic boys, launched a petition campaign through the website Change.org.
‘We had never met,’ Stilwell told ABC News.com. ‘I read about what Chrissy went through and was inspired.’
More than 20,000 online supporters have now come forward to demand the hospital give the toddler the kidney they say she needs to survive.
Responding to anger about Mia’s plight on the hospital’s Facebook page medical staff wrote, ‘We hear you.’
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