Makenna's Nystagmus Journey
Donation protected
Makenna is an intelligent 8 year old girl with congenital nystagmus. Makenna was born with nystagmus which involves involuntary, rhythmic movement or oscillation of the eye. Makenna's eyes are constantly moving back and forth (side to side). The movements increase when she is tired, anxious or not feeling well. Makenna has used a null point since she was very young. The null point involves her turning her head to the right and her eyes look to the left, which slows the movement of her eyes, making it easier for her to focus. Makenna had surgery in Ottawa four years ago, but sadly, the effects of the surgery have essentially worn off at this time.
Nystagmus is quite rare and unfortunately research and awareness in Canada are minimal. To date there are no available treatments that focus solely on nystagmus in Canada :( As a result the US is the best option to improve Makenna's vision.
Dr. Hertle at Akron Childrens Hospital is one of the few physicians in the world that does the horizontal tenotomy surgery (a different surgery than what she had in Ottawa). Surgery will increase Makenna's visual acuity through decreasing the movement of her eyes and reducing the degree of her null point. With the surgery Makenna will have a better chance of being able to drive.
Dr Lingua in Califronia is doing a clinical trial for a new nystagmus treatment. It is described as a radical new procedure but the results are amazing. The surgery essentially stops (or greatly reduces) the continuous, involuntary movement of Maki's eyes. Jen is currently waiting to hear if Makenna is a candidate for his procedure.
If Makenna is a candidate for Dr Lingua's surgery, Jen will have the tough decision as to what doctor will provide Makenna with a life changing opportunity. Both surgeries will improve Makenna's quality of life by allowing her to see the world easier. Both surgeries are very different from each other.
The timeframes for both Dr Hertle and Dr Lingua will have Makenna travelling in April 2016. The costs of each procedure seem to be relatively equal ($20,000). Travel and accommodation will be more for California as Makenna will need to stay there for two weeks after the surgery for follow up appointments and possible further surgery to make adjustments if necessary.
Yes, this should be something that is covered by OHIP, however in order for that to happen the Pediatric Ophthalmologist that Makenna has been seeing would have needed to sign the application for funding for OHIP and he has refused to do so. His ego is clearly more important (to him) than Makenna's future is. Sadly, the "specialists" in Canada aren't up to date on nystagmus research and therefore don't believe that there are treatments for it. It will be at least another two years before Canada gets on board when it comes to providing treatment to individuals with nystagmus.
I am trying to raise money for Makenna's family to help with these costs. As a proud mama, Jen wasn't going to do a fund me page... but as an auntie, I said we need to HELP!!! Thank you everyone! Hugs from all!!
If you require more information please don't hesitate to ask.
Nystagmus is quite rare and unfortunately research and awareness in Canada are minimal. To date there are no available treatments that focus solely on nystagmus in Canada :( As a result the US is the best option to improve Makenna's vision.
Dr. Hertle at Akron Childrens Hospital is one of the few physicians in the world that does the horizontal tenotomy surgery (a different surgery than what she had in Ottawa). Surgery will increase Makenna's visual acuity through decreasing the movement of her eyes and reducing the degree of her null point. With the surgery Makenna will have a better chance of being able to drive.
Dr Lingua in Califronia is doing a clinical trial for a new nystagmus treatment. It is described as a radical new procedure but the results are amazing. The surgery essentially stops (or greatly reduces) the continuous, involuntary movement of Maki's eyes. Jen is currently waiting to hear if Makenna is a candidate for his procedure.
If Makenna is a candidate for Dr Lingua's surgery, Jen will have the tough decision as to what doctor will provide Makenna with a life changing opportunity. Both surgeries will improve Makenna's quality of life by allowing her to see the world easier. Both surgeries are very different from each other.
The timeframes for both Dr Hertle and Dr Lingua will have Makenna travelling in April 2016. The costs of each procedure seem to be relatively equal ($20,000). Travel and accommodation will be more for California as Makenna will need to stay there for two weeks after the surgery for follow up appointments and possible further surgery to make adjustments if necessary.
Yes, this should be something that is covered by OHIP, however in order for that to happen the Pediatric Ophthalmologist that Makenna has been seeing would have needed to sign the application for funding for OHIP and he has refused to do so. His ego is clearly more important (to him) than Makenna's future is. Sadly, the "specialists" in Canada aren't up to date on nystagmus research and therefore don't believe that there are treatments for it. It will be at least another two years before Canada gets on board when it comes to providing treatment to individuals with nystagmus.
I am trying to raise money for Makenna's family to help with these costs. As a proud mama, Jen wasn't going to do a fund me page... but as an auntie, I said we need to HELP!!! Thank you everyone! Hugs from all!!
If you require more information please don't hesitate to ask.
Organizer
April Aerssen-Mizon
Organizer
St. Thomas North, ON