Penelope’s Fight For Sight
Donation protected
https://youtu.be/Qz_nBqStoBE
Hi everyone!
Firstly, I just want to say THANK YOU for taking the time to read and consider supporting our sweet baby girl. Whether that be through Donation, Sharing Penelope’s story, or simply through praying and positive thoughts for P and our family, It REALLY does mean the world to us!
Our precious Penelope was born March 10, 2019. Our first little girl after 4 handsome little guys. She was 6 lbs 3 oz of pure perfection and loved so much by so many. We started to notice a few weeks after Penelope’s birth that sometimes her eyes would shake quickly, and as most newborns do, her eyes seemed to have trouble focusing. At this time, we weren’t too concerned but we brought it up to the pediatrician at her 1-month appointment. The pediatrician felt at this time everything looked normal, but of course we kept an eye on things.
As we started approaching her second month, we still noticed her eye movement and that she was still struggling to make eye contact. Again, the pediatrician still felt everything was okay, her pupils were reacting to light, he agreed they were having trouble focusing but because of her age it could still be normal. It wasn’t until her 3-month checkup that we were able to get the pediatrician to agree that something could be going on.
Unfortunately, in our area there is only one pediatric ophthalmologist and the wait was going to be about a month! Let me tell you, that was the hardest month of our lives. To sit in worry and wonder if there was something wrong and what it would be. As we inched closer to her 4th month of life it was very clear to our family that something was going on and we were trying to prepare ourselves for the news we would receive at her upcoming appointment with the eye doctor.
On July 19th, 2019 we were finally seen by the pediatric ophthalmologist. My mother drove out to watch the boys so that Drew (My husband) could come with us. The appointment was 3 hours long with 2 different exams. The first portion of the exam was to look at the outside of her eyes, which looked great. We knew this much already from our pediatrician not feeling like anything was wrong.
The second portion of the exam they needed to dilate her eyes to look into her retinas. This was the scary part, I felt like we were holding our breath the entire time the doctor was looking into her eyes. I grasped Drews hand tightly as the doctor turned back on the lights and sighed. I will never forget those next words she said to us, “I wish I had good news to tell you, but I don’t.” Our hearts instantly sunk.
She then went on to tell us that Penelope’s Macula’s, which is the part of the eye in the retina that controls central vision, were being affected by dark pigment around them called Lacunae. She let us know that at this time there is no name for her condition and that it could be genetically related. She also let us know that she is more than likely severely visually impaired if not legally blind due to this defect.
Right now, we are still waiting for our big appointment up at Doernbecher’s in Portland that will be in December. They will be doing a full genetic panel as well as an ERG which will tell us a little more about what Penelope may be able to see or not see. The good news is that all other parts of her eyes seem to be healthy. We are hopeful that she does have light and shadow perception, but we really won’t know the full extent of her vision until she can vocalize that herself.
We have been taking our time now processing, researching, and becoming more familiar with her condition and I am absolutely amazed at how INCREDIBLE the blind and visually impaired community has been. They are so resourceful and helpful, and It is nice to know that I have a community to help us along this new journey that we are now on with our beautiful girl.
One night when I was up researching macular disorders, I stumbled across a doctor in Canada who is making great strides in helping people with very similar conditions as Penelope.
After a TON of prayer and of course more research, I decided to give the doctor in Canada a call. He chatted with me awhile about Penelope’s condition and felt confident that he could treat her. This obviously is not a cure, but if he can help our baby see better in any way, we feel that it is more than worth it to give Penelope that chance. The downside is that it is not covered by our insurance and is going to be costly.
We already have our first treatment scheduled for October 7th-9th in good faith that we will come up with the funds needed to go. It is not easy for our family to ask for help financially, but in this situation and for Penelope, we are putting our pride aside and asking for any and all support to get us to our goal.
Each treatment will be around $5,000 and we estimate she will need to go 3-4 times the first year and then 1-2 times a year for maintenance afterward depending on how well she is progressing. We would really love to reach our goal of $20,000 to ensure that we will be able to afford her first year and most critical year of treatment.
We will also be documenting our whole journey to Canada and updating frequently about Penelope’s progress on our YouTube Channel (CebSquad Vlogs) We would love for you all to follow along with us there as well. Again, our family thanks you so much for taking a moment of your day to read Penelope’s story and supporting Penelope’s fight for sight no matter how that may look. We appreciate it immensely.
https://youtu.be/AP7BuUsd_dY
UPDATE || OCTOBER 20, 2019
(VIDEO UPDATE WAS ALSO ADDED BELOW)
Penelope’s appointments went great❤️ Unfortunately, we were not able to receive any treatments this first visit, but the doctor does still feel confident he can help her! This visit was basically just a consult and first doctors appointment. It was a little disappointing to find out that we won’t be able to do the treatments right away, however, all of the reasons behind it were valid and we understand now thoroughly how everything is going to go. We will not be able to do the treatments until she is big enough to take the medication she will need to be on. The doctor also wants her to be able to vocalize what’s improving day by day so he can treat her according to her improvement.
He has asked us to update him with a full report of how she is doing every 6 months and believes if all goes well and she is able to vocalize her vision enough by the age of 2-3 then we will do her first year of treatment at that time. For now, we are just following the motions and helping her any way we can with physical therapy and our vision specialist. We will also start O & M therapy once she is starting to become mobile.
On our drive back from Canada I found another option of possible treatment that we are looking into this next week (Hyperbaric oxygen therapy) that may help improve her vision as well. I will keep you all posted on what happens with that. Overall, even though she doesn’t get to start her treatment yet, we left Canada with so much hope, love, and an incredible amount of validation!
We spoke with many other patients while in the waiting room who had traveled all over the world to come for these treatments. All of them had nothing but amazing things to say and reassured us we had brought our girl to the right place. Thankfully, We were only charged $280 for this visit so we still have all the funds for her first round of treatment once she is big enough.
We also now have plenty of time to raise the money for her second, third, and fourth round of treatments. Which is another plus side to things. Lastly, I know I said it already a million times over in the video, but like I said I really don’t think I can say it enough, THANK YOU SO MUCH for all of the love and outstanding support that is been shown to our family and our precious girl. Words could never express or say how grateful we are to have been blessed with the amazing people surrounding us during this time. We love you all so much!
Hi everyone!
Firstly, I just want to say THANK YOU for taking the time to read and consider supporting our sweet baby girl. Whether that be through Donation, Sharing Penelope’s story, or simply through praying and positive thoughts for P and our family, It REALLY does mean the world to us!
Our precious Penelope was born March 10, 2019. Our first little girl after 4 handsome little guys. She was 6 lbs 3 oz of pure perfection and loved so much by so many. We started to notice a few weeks after Penelope’s birth that sometimes her eyes would shake quickly, and as most newborns do, her eyes seemed to have trouble focusing. At this time, we weren’t too concerned but we brought it up to the pediatrician at her 1-month appointment. The pediatrician felt at this time everything looked normal, but of course we kept an eye on things.
As we started approaching her second month, we still noticed her eye movement and that she was still struggling to make eye contact. Again, the pediatrician still felt everything was okay, her pupils were reacting to light, he agreed they were having trouble focusing but because of her age it could still be normal. It wasn’t until her 3-month checkup that we were able to get the pediatrician to agree that something could be going on.
Unfortunately, in our area there is only one pediatric ophthalmologist and the wait was going to be about a month! Let me tell you, that was the hardest month of our lives. To sit in worry and wonder if there was something wrong and what it would be. As we inched closer to her 4th month of life it was very clear to our family that something was going on and we were trying to prepare ourselves for the news we would receive at her upcoming appointment with the eye doctor.
On July 19th, 2019 we were finally seen by the pediatric ophthalmologist. My mother drove out to watch the boys so that Drew (My husband) could come with us. The appointment was 3 hours long with 2 different exams. The first portion of the exam was to look at the outside of her eyes, which looked great. We knew this much already from our pediatrician not feeling like anything was wrong.
The second portion of the exam they needed to dilate her eyes to look into her retinas. This was the scary part, I felt like we were holding our breath the entire time the doctor was looking into her eyes. I grasped Drews hand tightly as the doctor turned back on the lights and sighed. I will never forget those next words she said to us, “I wish I had good news to tell you, but I don’t.” Our hearts instantly sunk.
She then went on to tell us that Penelope’s Macula’s, which is the part of the eye in the retina that controls central vision, were being affected by dark pigment around them called Lacunae. She let us know that at this time there is no name for her condition and that it could be genetically related. She also let us know that she is more than likely severely visually impaired if not legally blind due to this defect.
Right now, we are still waiting for our big appointment up at Doernbecher’s in Portland that will be in December. They will be doing a full genetic panel as well as an ERG which will tell us a little more about what Penelope may be able to see or not see. The good news is that all other parts of her eyes seem to be healthy. We are hopeful that she does have light and shadow perception, but we really won’t know the full extent of her vision until she can vocalize that herself.
We have been taking our time now processing, researching, and becoming more familiar with her condition and I am absolutely amazed at how INCREDIBLE the blind and visually impaired community has been. They are so resourceful and helpful, and It is nice to know that I have a community to help us along this new journey that we are now on with our beautiful girl.
One night when I was up researching macular disorders, I stumbled across a doctor in Canada who is making great strides in helping people with very similar conditions as Penelope.
After a TON of prayer and of course more research, I decided to give the doctor in Canada a call. He chatted with me awhile about Penelope’s condition and felt confident that he could treat her. This obviously is not a cure, but if he can help our baby see better in any way, we feel that it is more than worth it to give Penelope that chance. The downside is that it is not covered by our insurance and is going to be costly.
We already have our first treatment scheduled for October 7th-9th in good faith that we will come up with the funds needed to go. It is not easy for our family to ask for help financially, but in this situation and for Penelope, we are putting our pride aside and asking for any and all support to get us to our goal.
Each treatment will be around $5,000 and we estimate she will need to go 3-4 times the first year and then 1-2 times a year for maintenance afterward depending on how well she is progressing. We would really love to reach our goal of $20,000 to ensure that we will be able to afford her first year and most critical year of treatment.
We will also be documenting our whole journey to Canada and updating frequently about Penelope’s progress on our YouTube Channel (CebSquad Vlogs) We would love for you all to follow along with us there as well. Again, our family thanks you so much for taking a moment of your day to read Penelope’s story and supporting Penelope’s fight for sight no matter how that may look. We appreciate it immensely.
https://youtu.be/AP7BuUsd_dY
UPDATE || OCTOBER 20, 2019
(VIDEO UPDATE WAS ALSO ADDED BELOW)
Penelope’s appointments went great❤️ Unfortunately, we were not able to receive any treatments this first visit, but the doctor does still feel confident he can help her! This visit was basically just a consult and first doctors appointment. It was a little disappointing to find out that we won’t be able to do the treatments right away, however, all of the reasons behind it were valid and we understand now thoroughly how everything is going to go. We will not be able to do the treatments until she is big enough to take the medication she will need to be on. The doctor also wants her to be able to vocalize what’s improving day by day so he can treat her according to her improvement.
He has asked us to update him with a full report of how she is doing every 6 months and believes if all goes well and she is able to vocalize her vision enough by the age of 2-3 then we will do her first year of treatment at that time. For now, we are just following the motions and helping her any way we can with physical therapy and our vision specialist. We will also start O & M therapy once she is starting to become mobile.
On our drive back from Canada I found another option of possible treatment that we are looking into this next week (Hyperbaric oxygen therapy) that may help improve her vision as well. I will keep you all posted on what happens with that. Overall, even though she doesn’t get to start her treatment yet, we left Canada with so much hope, love, and an incredible amount of validation!
We spoke with many other patients while in the waiting room who had traveled all over the world to come for these treatments. All of them had nothing but amazing things to say and reassured us we had brought our girl to the right place. Thankfully, We were only charged $280 for this visit so we still have all the funds for her first round of treatment once she is big enough.
We also now have plenty of time to raise the money for her second, third, and fourth round of treatments. Which is another plus side to things. Lastly, I know I said it already a million times over in the video, but like I said I really don’t think I can say it enough, THANK YOU SO MUCH for all of the love and outstanding support that is been shown to our family and our precious girl. Words could never express or say how grateful we are to have been blessed with the amazing people surrounding us during this time. We love you all so much!
Organizer
Melanie Cebular
Organizer
Klamath Falls, OR