March 7, 2008
Jakob Isaac was born December 30th 2007 to Richard and I and it was the happiest day of our lives together. Jakob is a good baby, he only cries when he needs something and he has brought so much love and joy to his parents, sister, and everyone else who is lucky enough to know him. I was a little concerned about Jakob only because he didn’t seem to focus on anything or look at me no matter what I tried. He wouldn’t look at toys or react to anything in front of his face. I thought I was being a little dramatic but mentioned it to the doctor nonetheless. Dr Peacock was doing his 6 week check (at 8 weeks) and she felt that if I was concerned it didn’t hurt to check it out.
On March 5 we took Jakob to an ophthalmologist specializing in children. Throughout the entire appointment we both felt like we were wasting the doctor’s time, that Jakob was fine. I expected to hear he was fine, I was not prepared for anything else. My boy is so perfect, growing good, had no problems when he was born etc. So what else would I expect? The Doctor did several tests and then told us that Jakob’s optic nerve’s in his left eye looked under-developed but the right eye wasn’t as bad, she said this was called Optic Nerve Hypoplasia.
I suddenly couldn’t hear her voice anymore; my mind was racing, what did that mean??? She didn’t offer much of an explanation, just told us he would need an MRI (I didn’t know what that meant either really) and that she would need to see him again in 6 weeks. My eyes were filled with tears that I didn’t want anyone to see so I just darted right out of the office until I turned around and saw that Richard wasn’t there. He was so strong; he made the next appointment and took a piece of paper with those 3 words on it that would change our lives forever. I didn’t understand what was happening at all; I didn’t know the meaning of the word, what it meant for my beautiful baby boy who had just begun his life.
When we arrived home we sat together at the computer and googled ONH and discovered what it meant. Our precious boy could be blind!! He could have anything from darting twitching eyes, blindness, pituitary gland growth problems, and a million other scenarios in between. It seemed the condition had so many variables, but we didn’t know, nor would we know the extent of his condition until an MRI is done. We read so much information, almost none of it was positive; our hearts were breaking. Richard and I mourned for what we knew and even more for what we didn’t, we both wished out loud that we could just give him our eyes. In the last 48 hours I have overloaded us with information about this disorder, in the beginning it was so scary everywhere I looked said that there was no cure for this disorder. I didn’t know how to accept that my son would be blind, he would never see my face, or see the way his daddy looks at him, he would never drive a car, never see the millions of things that we take for granted everyday. I decided I would not accept anything until I know the results of the MRI.
I do know in my heart though that he does not see me, and it has brought me to my knees so many times in the past 2 days. Every time I look at his face I am searching for a sign that he sees me, that he sees something, and each time I don’t see a sign I feel my stomach rise up to my throat. It didn’t seem real, why was this happening to us? This can’t really be happening can it?? Richard and I have grieved so much in the past 2 days but we also grew closer in our sorrow, and talked about how we felt about it. We both seemed to have different waves of emotions. It seemed when I felt the lowest he would give me something positive about it to think of, and I did the same for him. We knew we would do anything in the world to help our little boy to see and we tried to focus on our strength and find a way to believe.
I started doing different searches to find real people who were experiencing the same things; I had also seen ads for Stem Cell procedures. I read so many stories; no two stories were the same but there were way more kids with milder cases than severe, so I found hope in that. Then I found a website with a handful of kids ranging in age from 10 months to 9 years old, most of which were completely blind from this disorder. They had all participated in stem cell transfusions with great hope that their children would see for the first time.
ONH is when the optic nerves are underdeveloped and therefore can’t send the message to the brain telling it what you are seeing. In China they will put millions of stem cells from placenta’s of healthy full term children, that would otherwise just be discarded, and inject them in the spine; they travel up and essentially grow missing nerves where they are needed. I of course have just begun to research this possibility but I am trying to be hopeful and obtain as much information as I can.
There have only been around 10 kids from the USA who have gotten this procedure done and they have all had amazing improvements, some seeing their mothers face for the first time. The children can’t see perfectly normally but they have gone from seeing black to seeing something. Chinese doctors and their patients are claiming a 100% success rate and it gives me much needed hope to hold on to. One year ago these procedures weren’t happening at all and now it’s a cure. I now feel like this has happened to us for a reason, maybe Jakob will be able to get the help he needs, even if it’s in China. Maybe we can raise awareness to the miracle it would be if this procedure could mean that he sees for the first time. I feel a fire in me now.
I want to learn and research and do anything in this world to help my baby. I know I could find so many people to help us get to China and maybe it would bring them one step closer to making it an available treatment here. As of now they say it will be another 7-10 years before that is a possibility here. I don’t want to wait that long. I don’t want Jakob to have to wait that long to see everything beautiful.
I pray for my son, for my family, I know deep within me that we will all have the love and strength to get through this and no matter what my son is perfect and beautiful and this will not define who he is. It will make us stronger, better people. So this is two days……………….its been a rollercoaster.
March 11, 2008
The days seem to be getting easier now. We finally stopped crying, but I feel guilty for smiling, laughing, and having fun; I’m not sure why. I have filled my mind with hope in a cure and hope that Jakob isn’t the worst case scenario. It’s so hard sometimes to even believe there is anything wrong. Jakob smiles, coos, talks, and I think he giggled today. I am so touched by our friends and families. Everyone is so supportive and most have offered their time to us when the time comes to fund-raise. I feel blessed to have such a strong circle around us. I know that no matter what we each believe as individuals there will be power in all the prayers together.
I feel like I can only take doing so much research, it brings me down and makes it difficult to get through the day. There is so many bad scenarios, I feel like I have completely erased them from my mind and thought solely of curing my son. That is until I start looking again and then reality sets in once again. I only have one basket to put my eggs in, and that is where they lie. The hospital just called me to do a requisition for the MRI so I guess the wheels are in motion, its almost been a week now since we found out, I am incredibly anxious to get the MRI done. I’m scared to death, but at the same time I can’t wait for some answers.
April 8, 2008
Jakob had his MRI today and the doctor called immediately with the results. They were not good. She couldn't tell us much more than that though, so all I can do is speculate. She gave us a copy of the MRI and said she would send us to a Neurologist to better explain the diagnosis. As I sit here and wait for yet another doctor's appointment I can't fight the urge to know more. I looked up all the big words I don't understand from the MRI and tried to self-diagnose. That was a horrible idea, everything sounds so scary.
May 6, 2008
Jakob had his appointment with the Neurologists at the Children's Hospital today. They spent nearly 3 hours with us explaining everything that is going on with Jakob. The good news is this is not a progressive disorder so he won't get worse. Also his pituitary gland is intact and looks healthy. However since Jake is so young we do not know how it may affect his learning and development in the future. We still don't know if he has some vision, but in my heart I know he does not see. I think there is a chance that he can see light but again all of this is speculation. They officially diagnosed Jake with Optic Nerve Hypoplasia, Septo Optic Dysplasia, and Closed Lip Schizencenphaly. Basically it means his optic nerves are small, a mid-line area in the brain is there but is small, and he will almost certainly suffer from seizures and development problems.
I have spent endless hours reading everything I can get my hands on regarding Stem Cell Treatments. The doctor's don't all seem to agree that it is the best thing to do, but he has some doctor's who have an open mind and are willing to learn more about it. Richard and I have decided that we HAVE to do this for him. I have spoken to other Mom's with kids who have already returned from their treatment, and I can't ignore the results. All of the children have had some amount of improvement, and the younger they are the better the results have been. It is extremely scary, but I believe this can help my boy be all that he can be. How can I look him in the eye 10 years down the line and say I had a chance to do something but I was too scared to do it. My hope is that this treatment will help not only Jakob, but bring awareness to his disorder and the fact that Stem Cell Treatments are curing people with over 40 different disorders. Perhaps it could help make those treatments available here that much sooner.
I will also be taking Jake to developmental clinics and the Canadian National Institute for the Blind. They can help teach me how to stimulate him, and encourage his development.
As time goes on I find strength in the hope for a treatment, as well as acceptance that this is happening to him, to all of us.
June 17, 2008
The website has been up a month now and I couldn't be happier with the progress we have made. So many friends, and so many strangers have helped us in so many different ways. I am touched by all of you, I only hope I will be able to give back to someone the way you have all given to us.
My days are hectic, chaotic even. But the reward at the end of each day is seeing that we are all making a difference, we are all making this happen. I believe more and more every day that this is going to happen, not just for us but for so many others. We are raising the awareness, we are educating, and we are coming together in a way I have never before seen.
Today I visited an Elementary School in Okotoks. I sat with Jake in front of all these little grade one faces. We told our story to them and they asked some wonderful questions. They gave Jakob a dog that is easily 5 times his size so that he could feel it and know that it was from them because they care. They all agreed to go home and do something to earn some money that they could donate to us. I sat in my car and cried when I left. I am just so overwhelmed by all of this kindness, by all the people our story has touched, and by how big this has become in one short month.
Jakob is doing well, great actually. He is sitting up almost by himself. He is the happiest little guy I have ever seen. I think he feels all the energy surrounding him. I think he feels the prayers, and the strength within all of us.
I am still trying to get appointments booked in order to get all his medical testing done, we can not get a date booked for his treatment until we have those things done. We are confident however that we will be ready in October.
We are almost at twelve thousand dollars today. We have not even had an event yet.
Thank you all for everything.
You are Jake's angels, and this is all happening because of you.
