Ben's Adventure Plan
Donation protected
Last Fall, my 18 year old son, Ben, complained glare was bothering him. I thought nothing of it, got him to wear sunglasses more and left it at that. Last April, he lost his regular glasses and so a trip to the Optmetrist was needed. During his exam, she noticed his peripheral vision wasn't what it used to be and investigated further. She saw pigmentation around his retina and referred us to a specialist. After several months of waiting and more tests including a trip to St. Michael's Hospital for further evaluation, Ben has been diagnosed with Retinitis Pigmentosa.
RP refers to a group of degenerative eye conditions that eventually lead to blindness. While some with RP have limited use of central vision (like looking through a straw) Ben has cone involvement too which means his central vision is effected as well as peripheral. There is no known cure for RP at this time or into the near future.
We were first told he had several years of progressively lessening vision but during Ben's second week at school (first year University) he noticed a dramatic change in his vision and struggled to see, was tripping over curbs and bumping into people. We rushed him to the doctor again only to find his vision had worsened again. At this point he lost his driver's license, no longer able to meet the standards for safe driving.
I'm reaching out today because yesterday, he was evaluated by the CNIB and found his vision had worsened yet again, from the doctor's report in Sept.
Ben's vision loss is happening much faster than we imagined and we would like to take him on some adventures to have him see some of this magnificent planet before he can't.
Also, this week we heard about a doctor in New Jersey who is using acupunture (Chinese Opthamology) for various eye conditions including RP, with promising results. Clinical studies were done with John Hopkins University and while they won't endorse the procedure, given the need for more analysis, many people have had the progression of the disease stop while others have regained some function where there was none before. It' s not a cure but if we can slow or stop Ben's vision loss, we need to try.
As the sole financial support for my two boys who are both in university, I do not have the additional funds needed to accomplish all this in such a short period of time and am asking for support.
The clinic in the U.S has space for him the end of November. The funds raised will be used to travel there, pay for the procedure, accomodation and to help pay the bills while I take some time off work to go with him.
If we raise more than our immediate goal, the remainder will go to fund Ben's additional needs such as additional treatment if it works, technology for people with low vision and whatever other support he needs to accomplish his goal of becoming a teacher. Every penny will go to support Ben and his goals with hopefully a trip or two so he can see some of the places he's always wanted to see.
It seems these days every family has something difficult to deal with and so reaching out for help is uncomfortable. If you can assist us, even in the smallest way, please accept our gratitude. And if prayers and good wishes for Ben are what you can offer, then please accept our deepest thanks for those as well.
Thank you.
RP refers to a group of degenerative eye conditions that eventually lead to blindness. While some with RP have limited use of central vision (like looking through a straw) Ben has cone involvement too which means his central vision is effected as well as peripheral. There is no known cure for RP at this time or into the near future.
We were first told he had several years of progressively lessening vision but during Ben's second week at school (first year University) he noticed a dramatic change in his vision and struggled to see, was tripping over curbs and bumping into people. We rushed him to the doctor again only to find his vision had worsened again. At this point he lost his driver's license, no longer able to meet the standards for safe driving.
I'm reaching out today because yesterday, he was evaluated by the CNIB and found his vision had worsened yet again, from the doctor's report in Sept.
Ben's vision loss is happening much faster than we imagined and we would like to take him on some adventures to have him see some of this magnificent planet before he can't.
Also, this week we heard about a doctor in New Jersey who is using acupunture (Chinese Opthamology) for various eye conditions including RP, with promising results. Clinical studies were done with John Hopkins University and while they won't endorse the procedure, given the need for more analysis, many people have had the progression of the disease stop while others have regained some function where there was none before. It' s not a cure but if we can slow or stop Ben's vision loss, we need to try.
As the sole financial support for my two boys who are both in university, I do not have the additional funds needed to accomplish all this in such a short period of time and am asking for support.
The clinic in the U.S has space for him the end of November. The funds raised will be used to travel there, pay for the procedure, accomodation and to help pay the bills while I take some time off work to go with him.
If we raise more than our immediate goal, the remainder will go to fund Ben's additional needs such as additional treatment if it works, technology for people with low vision and whatever other support he needs to accomplish his goal of becoming a teacher. Every penny will go to support Ben and his goals with hopefully a trip or two so he can see some of the places he's always wanted to see.
It seems these days every family has something difficult to deal with and so reaching out for help is uncomfortable. If you can assist us, even in the smallest way, please accept our gratitude. And if prayers and good wishes for Ben are what you can offer, then please accept our deepest thanks for those as well.
Thank you.
Organizer
Leslie Burns
Organizer
Aurora, ON