Support Dakota on her next brain surgery journey!
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By now most of you know about my niece, Dakota Scully and her ongoing medical challenges but for those of you who don't here is her medical story:
Just two weeks after her tenth birthday, on September 29th 2019, Dakota was diagnosed with having her first ischemic stroke. She was quickly transferred via air ambulance to Toronto Sick Kids where she continued to have multiple strokes and go downhill despite the best efforts of many skilled departments.
On October 14th, Dakota became unresponsive and was rushed to surgery for an emergency craniotomy (they removed a large portion of skull on the right of her head to allow her brain to swell). She survived the 4 hour procedure & was on life support for 72 hours to allow her mind the best chance at healing. It was the most terrifying 3 days and when Dakota did wake up, many things were different. She was physically rendered to a newborn stage, mentally pushed back several years and lost over 50% of her vision. Once she was stable enough following surgery, she was moved to Holland Bloorview Kids Rehabilitation Hospital where she spent 4 long months in recovery.
Dakota's strong will & fighting spirit shone through as she took little pity on herself and fought hard to learn new skills, relearn old ones & learn to work within her disabilities. She went from diapers, being unable to sit unassisted or move her legs to walking in just 16 weeks.
Just two weeks after her tenth birthday, on September 29th 2019, Dakota was diagnosed with having her first ischemic stroke. She was quickly transferred via air ambulance to Toronto Sick Kids where she continued to have multiple strokes and go downhill despite the best efforts of many skilled departments.
On October 14th, Dakota became unresponsive and was rushed to surgery for an emergency craniotomy (they removed a large portion of skull on the right of her head to allow her brain to swell). She survived the 4 hour procedure & was on life support for 72 hours to allow her mind the best chance at healing. It was the most terrifying 3 days and when Dakota did wake up, many things were different. She was physically rendered to a newborn stage, mentally pushed back several years and lost over 50% of her vision. Once she was stable enough following surgery, she was moved to Holland Bloorview Kids Rehabilitation Hospital where she spent 4 long months in recovery.
Dakota's strong will & fighting spirit shone through as she took little pity on herself and fought hard to learn new skills, relearn old ones & learn to work within her disabilities. She went from diapers, being unable to sit unassisted or move her legs to walking in just 16 weeks.
On March 25th 2020, Dakota underwent cranioplasty surgery to have her piece of skull re-placed over the brain. She healed very well and all seemed well until later that spring when we noticed the skull bone flap they just put in was dissolving. Her body, no longer recognizing the bone, was eating away at it. This was hard for Dakota, as she now had many restrictions due to her unprotected brain. She could not play like other kids and since she taking high doses of blood thinners it made her very fragile as bleeds were harder to stop. She also continued to have TIAs that medicinal treatment was not preventing.
It wasn't until March 30th 2021 that they were able to perform a cranioplasty surgery where they placed a prosthetic skull piece over the brain. Surgery wise she healed wonderfully, however, some new complications arose. She had 2 transient attacks (TIAs) on the left side of her brain that caused her to have temporary trouble breathing and speaking. This is bad news because no one can come up with a diagnosis for her. Her illness seems progressive and it's so important that we keep the left side of her brain safe and provide it with an unaffected blood source. A neurosurgeon from Sick Kids has offered us a surgery that will hopefully do just that. It's called Pial Synangiosis. The risk of stroke following this surgery is high, 1 in 20, and Dakota's odds will be higher. Another stroke at this point will leave her at best set back again physically & mentally & at worst, death. Those are the odds for 30 days post surgery. The doctors think it's her best chance. And her odds doing nothing will be same if not worst. We are waiting to hear the official surgery date in June.
Dakota and her family live over 3 hours away from a hospital that understands what care needs to be provided if any concerns do arise. This is terrifying. So once the surgery date is set, Richard and Kara hope to keep Dakota in Toronto, close to Sick Kids, for the month following surgery. This will give them so much peace of mind and a little bit of comfort during such a scary time.
It wasn't until March 30th 2021 that they were able to perform a cranioplasty surgery where they placed a prosthetic skull piece over the brain. Surgery wise she healed wonderfully, however, some new complications arose. She had 2 transient attacks (TIAs) on the left side of her brain that caused her to have temporary trouble breathing and speaking. This is bad news because no one can come up with a diagnosis for her. Her illness seems progressive and it's so important that we keep the left side of her brain safe and provide it with an unaffected blood source. A neurosurgeon from Sick Kids has offered us a surgery that will hopefully do just that. It's called Pial Synangiosis. The risk of stroke following this surgery is high, 1 in 20, and Dakota's odds will be higher. Another stroke at this point will leave her at best set back again physically & mentally & at worst, death. Those are the odds for 30 days post surgery. The doctors think it's her best chance. And her odds doing nothing will be same if not worst. We are waiting to hear the official surgery date in June.
Dakota and her family live over 3 hours away from a hospital that understands what care needs to be provided if any concerns do arise. This is terrifying. So once the surgery date is set, Richard and Kara hope to keep Dakota in Toronto, close to Sick Kids, for the month following surgery. This will give them so much peace of mind and a little bit of comfort during such a scary time.
Organizer and beneficiary
Samantha Partridge
Organizer
Corbeil, ON
Kara Scully
Beneficiary