Ever think you don’t matter? We all do sometimes. Join us in supporting the Jack Trust Fund – and you’ll be reminded just how much you matter in this world – just like Jack! Giving and sharing of ourselves…it’s good medicine for our souls and spirits!
Rebecca and Austin are the parents of Everette (6), Grayson (4), Landen (2), Nora (1) and the youngest baby, Jack, who was born May 23rd 2018. They were blessed by Jack’s birth and all his brothers and sisters were excited for him to come home! Prior to this, Rebecca and Austin were given news that Jack had Spina Bifida, a neural tube defect (NTD) – which means his spinal columns failed to develop properly. Results of this defect vary in different degrees of permanent damage to the spinal cord and nervous system. Since his birth it’s meant many visits to hospitals and doctors here in Kingston and in Toronto, both at Holland Bloorview Kids Rehabilitation Hospital and Sick Kids: The Hospital for Sick Children.
Jack has been diagnosed with Myelomeningocele (my-low-ma-ninjo-seal), the most severe form of Spina Bifida in which the spinal cord and its productive covering protrude from the opening in the spine. He has some movement in his legs, however there remains paralysis in his ankles, feet and toes resulting in no feeling. As of now the doctors are telling Rebecca and Austin to fully expect Jack to be in a wheelchair as he gets older – which will only make this lovely little boy all that more special; though they continue to ensure he gets all the supports necessary to leverage his strengths as he gets older.
Rebecca and Austin love Jack just the way he was born; he is their fighter and a damn fine one at that. Jacks family comes from Tyendinaga Mohawk Territory and he carries the strength and resilience of his grandparents and great grandparents! He loves cuddles, kisses and his siblings are more than happy to give him a ton of them! His Nana and Pa are right alongside him as are his uncles, aunties and extended family. Rebecca and Austin, like many parents of a child with special health care needs are becoming subject experts and finding a great deal of emotional support (and new information) from the Spina Bifida community, their families and all medical professionals who are supporting Jack and themselves. However, their family is finding the financial burden of traveling to and from Toronto very difficult to manage and as Jack gets older and his needs more complex they are beginning to worry about costs that won’t be covered by the health care system. Rebecca and Austin have limited income and depend on government assistance, so these expenses are challenging for their family.
This is why the community has established the Jack Trust Fund to help raise funds to support Jack and his healthy development. This fund will be administered by a family friend, (a local business owner), who will ensure it all gets to Rebecca and Austin for travel and other related expenses to support Jack and their family. We simply want to Jack to be a Trust Fund baby…why not, eh?
There are several ways people can support the Jack Trust Fund:
- Attend an event (our first will be October 27th, 2018 3:30 PM – 9:30 PM – a haunted house in Kingston, Ontario)
- Volunteer for one of our events
- Donate Miles (Aeroplan / Via Preference), Gas Cards or Hotel Gift Certificates that can be used in Toronto
- Donate an item / gift certificate for a silent auction (each of our events will have that component)
- Make a donation at this fundraising page: (coming soon!)
Email [email protected] for opportunities other way to stand up for Jack and ensure he has the most equitable care available to him!