I’m hoping that some of you will be able to help! A dear friend of mine (and fellow Stittsville mom Jen Martin) will be bringing her daughter to Ohio for a surgery for congenital nystagmus. Unfortunately, this surgery is not offered in Canada, nor will it be covered by OHIP despite attempts to have it covered! We have started a GoFundMe page to help Jen cover some costs. Please find it in your hearts to help Makenna get this life changing surgery! Jen, Makenna and I thank you!
The family continues to try to get the cost of the surgery covered by OHIP, but in the meantime friends are helping to raise money to cover all or part of the $20,000 the surgery will cost in the United States. Here’s part of the description from the GoFundMe page:
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 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.