Sofia's Practical Ride!
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Sofia is a 4 year old sweet girl who lives with a Rare Genetic condition, Rett Syndrome. Along with her primary diagnosis come a long list of secondary complexities caused from Rett Syndrome - Epilepsy, Scoliosis, Acid Reflux, Osteoporosis, and severe digestion complications. Sofia is non-ambulatory and non-verbal; using Eye Gaze technology to communicate.
Most recently Sofia was diagnosed Palliative due to a rapid progressive decline in health over a 9 month period. After a lengthy Hospital stay Sofia's care team made the decision that it was time she was referred to CHEO's Palliative Care Team. Quickly becoming frequent flyers in their program, they became familiar with Sofia. After a stay at the Roger Neilson House they told us to "Take her home", "To enjoy her and what she has to offer now" and "It wasn't a matter of if, only of when". We gathered our last wishes for her and what those early days after her passing would look like. We signed DNRs. Shared the news with our family and slowly made the 4.5 hour trek back home.
Although, Sofia isn't in an active "End of Life" status were aware of what the outcome will be, in time.
In the past few months Sofia lost the remaining skills she had left. Ability to sit independently, good neck control, and ability to eat and drink orally.
Most recently, Sofia was a recipient of a G-Tube (Feeding tube). Severe oral feeding troubles became apparent last Spring. Although, eating and weight gain has always been a struggle of Sofia's. It became more prominent, resulting in a more severe lack of weight gain. We're happy to report the G-Tube has made a world of a difference! However, with that comes troubles lifting and transferring her to/from the Wheelchair to a vehicle. It's time for something more practical!
She's a tall girl and now weighing just shy of what a typical 4 year old should weigh, car rides in a typical car seat are tricky. We recently learnt how troublesome all of this was becoming when she started regularly attending School. Not only is it hard on us, it's hard on Sofia's body - Especially with Scoliosis, it's become painful for her during a lift or transfer.
SO! We're really hopeful with the funds raised we can comfortably purchase an Accessible Van for Sofia. We've successfully secured a portion of the conversion through the March of Dimes.
We thank our community for the continuous support throughout Sofia's journey. Any amount, small or large counts! We can't wait to share Sofia's "Practical Ride" with everyone who is apart of her journey.
Sincerely,
Sofia & Family OX
Learn More About Us At:
Sofia's Blog on Facebook: https://www.facebook.com/SofiasVoice/
My Podcast: https://anchor.fm/jordanlepkan
Learn more about Rett Syndrome visit,
The Ontario Rett Syndrome Association at: www.rett.ca
Most recently Sofia was diagnosed Palliative due to a rapid progressive decline in health over a 9 month period. After a lengthy Hospital stay Sofia's care team made the decision that it was time she was referred to CHEO's Palliative Care Team. Quickly becoming frequent flyers in their program, they became familiar with Sofia. After a stay at the Roger Neilson House they told us to "Take her home", "To enjoy her and what she has to offer now" and "It wasn't a matter of if, only of when". We gathered our last wishes for her and what those early days after her passing would look like. We signed DNRs. Shared the news with our family and slowly made the 4.5 hour trek back home.
Although, Sofia isn't in an active "End of Life" status were aware of what the outcome will be, in time.
In the past few months Sofia lost the remaining skills she had left. Ability to sit independently, good neck control, and ability to eat and drink orally.
Most recently, Sofia was a recipient of a G-Tube (Feeding tube). Severe oral feeding troubles became apparent last Spring. Although, eating and weight gain has always been a struggle of Sofia's. It became more prominent, resulting in a more severe lack of weight gain. We're happy to report the G-Tube has made a world of a difference! However, with that comes troubles lifting and transferring her to/from the Wheelchair to a vehicle. It's time for something more practical!
She's a tall girl and now weighing just shy of what a typical 4 year old should weigh, car rides in a typical car seat are tricky. We recently learnt how troublesome all of this was becoming when she started regularly attending School. Not only is it hard on us, it's hard on Sofia's body - Especially with Scoliosis, it's become painful for her during a lift or transfer.
SO! We're really hopeful with the funds raised we can comfortably purchase an Accessible Van for Sofia. We've successfully secured a portion of the conversion through the March of Dimes.
We thank our community for the continuous support throughout Sofia's journey. Any amount, small or large counts! We can't wait to share Sofia's "Practical Ride" with everyone who is apart of her journey.
Sincerely,
Sofia & Family OX
Learn More About Us At:
Sofia's Blog on Facebook: https://www.facebook.com/SofiasVoice/
My Podcast: https://anchor.fm/jordanlepkan
Learn more about Rett Syndrome visit,
The Ontario Rett Syndrome Association at: www.rett.ca
Organizer
Jordan Lepkan
Organizer
North Bay, ON