‘Miracle girl’ continues to defy the odds
Mary was born with the terminal form of a rare genetic disorder called Smith Lemli Opitz Syndrome (SLOS), which has physical symptoms including a weak heart, curved spine, very low cholesterol levels and a cleft pallet meaning she can’t eat solids.
Her mother Anita feeds her through a nasal tube and Mary weighs less than nine pounds, as poor weight gain is another symptom of the syndrome. There is a slim hope that if she puts on enough weight she might be suitable for treatment in the US but, in the meantime, every day she lives is a blessing for Anita and her mother, also Mary.
“She was diagnosed at about two weeks old and we were told she probably wouldn’t live another fortnight so she really is a miracle girl,” said 18-year-old Anita from Drogheda, Co Louth.
She was preparing for her Leaving Certificate Applied when she got pregnant and Mary was born on February 25 last year. Although most of their days are spent with Mary, the family are helped with respite care every few weeks by nurses from the Jack and Jill Foundation.
Anita and her mother are planning Mary’s third visit to Lourdes early next month and hope to celebrate her birthday two weeks later.
“We believe a seven-year-old girl in Canada is the oldest living person with this type of SLOS but we don’t know what will happen with Mary from day to day,” said Anita.
A fund set up to help Mary and to assist the Jack and Jill Foundation is being aided by a CD recorded by Drogheda band Last Resort. It features three of their own songs and Jimmy McCarthy’s Wonder Child, with title track Maria Anita Angelica named after Mary.
It is being sold at CD World in Drogheda but Mary’s grandmother has asked for other stores around the country to stock it.
In the meantime, Mary’s consultant, Dr David Vaughan from Our Lady of Lourdes Hospital in Drogheda, continues to treat her and keep in touch with the latest developments on SOLS to help Mary live a better life.
* For more information about the CD — A Song For Mary — or Baby Mary’s Lourdes Fund, call Mary Cunningham on 086 8795181.
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