My niece Ellie was born to my sister-in-law, Kristy, in May 2012 with a rare genetic disorder called Rubinstein-Taybi Syndrome (Rubinstein-Taybi Syndrome )
Ellie spent the first 3 weeks of her life in a NICU and was diagnosed to be a "special needs" child with both physical and developmental delays, of which we won't know the full extent of until she grows. With this disorder comes many health complications, possible sight, hearing and speech problems as well. She has been sick for most of her life so far, be it colds, pneumonia, RSV, digestive/gastro problems... The list goes on. She has been in and out of the hospital several times in the last 18 months.
Kristy had been dreaming of becoming a Mom for a very long time, and decided to have a child on her own through an anonymous donor. She works full time in a day program as a Developmental Service Worker with adults with disabilities. Needless to say, life can be very stressful for Kristy. She has extremely supportive friends (and family;) who do what they can to help her out, but all work and have families of their own, and cannot always provide her with the support she needs. Single Mom's often struggle to manage all the ups and downs, commitments, work, bills, etc.,
and Kristy is no exception. When Ellie is sick and unable to go to daycare, or has specialist appointments which often require her to travel to Toronto, Kristy is required to take a Vacation day from work, as no sick days for family are provided by her employer. She has run out of vacation days because of this, and now has to take unpaid days off to take Ellie to her appointments. All of these unforseen circumstances are adding to financial stress.
I am creating this page in the hope of raising funds to help Kristy with: unpaid days off work; respite/child care as a professional would be needed to care for Ellie as she has choking, vomiting and respiratory issues; recommended by CNIB, an iPad with a communication app to help Ellie with her developmental needs - government funding is not available. Kristy is a warm, kind, generous and STRONG Mama in need of a little of this in return. Please help to give Ellie & Kristy a "stress-less" holiday & new year!
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