Posted by Michael Wonder on 13 Dec 2016
Children of woman with rare disease ask Santa for 'mummy's medicine'
13 December 2016 - Two Kiwi children whose mother is fighting for life-saving treatment have asked Santa for "mummy's medicine" this Christmas.
Samantha Lenik of Orewa has Pompe, a rare and ultimately fatal disease which leads to progressive muscle weakness, wheelchair dependence and breathing assistance.
Lenik, who today presented a petition to Parliament calling for PHARMAC to receive more funding for treatment of rare diseases like hers, said reading her children's wish list this year was heartbreaking.
The petition had been tabled and accepted and would be announced by the speaker of the House at 2 pm today.
