Makenna is an intelligent 8 year old girl with congenital nystagmus.

LETTER: GoFundMe for 8-year-old girl’s surgery

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!

Angel Boyer
Stittsville

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.

 


SHARE THIS

6 thoughts on “LETTER: GoFundMe for 8-year-old girl’s surgery”

  1. The family may wish to consider attempting to have an appropriate Ontario specialist physician complete and submit to OHIP an OHIP Request For Prior Approval For Full Payment For Insured Out-Of-Country (OOC) Health Services.

    1. Perry – I have most certainly attempted to have this done but have not been successful as sadly the ‘specialists’ here are ignorant about nystagmus and their egos are their concern — not the well being of patients. I have exhausted all options when it comes to having this surgery covered by OHIP – as it should be.

      1. You may wish to consider filing complaints against the physicians with the College of Physicians and Surgeons of Ontario and you may also wish to consider filing a complaint against OHIP with the Ombudsman. I was OHIP’s lawyer for many years.

    1. The only surgery done in Canada for nystagmus is a modified surgery that is done for strabismus (lazy eye). No surgery to treat nystagmus alone is allowed to be performed in Canada!!
      Eye movement recordings and other related tests weren’t/aren’t competed and so it turns out the surgeons ‘guess’ on what needs to be done to which muscles – essentially performing eye surgery blindly. It’s not uncommon that this surgery looses its effect with time.

Leave a Reply

Your email address will not be published. Required fields are marked *