Sometimes you get answers but they are not the answers you were hoping for.
In our last blog we requested prayer that we would find out some answers to the cause of Peter’s blindness.
Well we did find out an answer but it is not something we had ever heard of and wanted to know about.
Peter has been diagnosed with a rare genetic degenerative neurological disease called Battens disease. Basically his cells don’t deal with waste which causes the waste to build up and kill off the cells. Vision loss is one of the first symptoms and followed by behavioral issues and cognitive decline. Peter may also experience seizures in the next few years. The disease will progress further but there is no set time line as each child is affected differently. Eventually the disease will progress to where Peter is unable to walk, talk, or eat on his own. Unfortunately Batten disease has no cure and unless a cure or treatment is found Peter will pass away from it in his late teens to his twenties.
We are heartbroken but also trying to do everything that we can to enjoy the good moments, days, months and hopefully years we have with Peter before his health declines further. Peter knows he has something called batten disease and that it caused his blindness and such. He does not know anything about what may come and we don’t want him too. We are asking that you do not talk to him or other children about the things to come. As much as he can be we want him to be a normal 7 year old for as long as possible. We are trying to do everything we can to be intentional about making the most of the good times we have together while Peter is still in good health. We are trying to live in the present moment and not get overwhelmed or concerned about what the future may be.
We know that God can and will heal him. It may be through a miracle and God’s healing touch, it may through a miracle of a scientific break though, or it may be through the miracle of the ultimate healing received in heaven.
We have shared the news with some of our circle. This weekend we shared the news with our congregation. And now we are sharing with our Facebook Framily. Many of you have supported us so much during our journeys here in the US and South Africa and now in Ohio. However, we are asking that you don’t share or discuss this news with children as we would like Peter to be as normal as possible for as long as possible.
As we have shared this news many have asked what can we do to help. Right now we are doing okay. We will likely need more support as this progresses but we also know it is hard to not be able to do anything. So we have tried to think about an answer.
- The first answer is prayer. Pray for us that we would have patience, grace and strength for the moment in front us. Some days are great and wonderful and filled with laughter and fun. Other days are filled with struggles, tears, and frustration. Pray that we would be able to soak in the good days and have grace for the difficult days and times.
- Second We are trying to be intentional to make the most of the healthy time we have with Peter. So Peter is involved in horses, karate, and piano. The times when he is not in school or at one his other activities you will find him playing Lego, playing soccer, doing crafts, and lately planning for his tree house. He has big plans for a tree house and we are going to do what we can to make it happen. So if you are local and have building materials that you are wanting to get rid please let us know. (Picture is of the Tree House Model Joe and Peter created.) If you are not local but want to be a part send us a message and we can figure out a way for you to be involved.
- Third, restaurant gift cards or gas gift cards. I will be honest there are times that this is all very exhausting and figuring out dinner sometimes just seems like an overwhelming task. These will be just a small way to lessen the load a bit sometimes and like a hug from our Framily to us.
- Forth, Peter LOVES audiobooks, having books read to him, and hearing someone tell stories. If you have the ability to record yourself reading a story or telling a story and sending it to us Peter would love that. It only needs to be an audio file, because he wouldn’t be able to see the video anyway. J
There are blessings in the midst of the struggles.
- As much as we don’t like the answer, it is a blessing to have an answer and to know what we are dealing with. This allowed us to make a shift to focus on the moment and being intentional to focus on the present moment.
- We know that our time with Peter is limited and so we know we need to make as many memories as we can while he is still healthy. Shortly after we found out about Peter’s diagnosis the school shooting happened in Texas. Those parents had no idea that there time with their children was limited.
- There are only 6 Batten’s Centers in the world. We live an hour and a half from one of them at Nationwide Children’s Clinic. We have been seen by a team of doctors and specialist there and they are pleased with where Peter is at now. They will walk with us the disease progresses and we are thankful.
- Peter was diagnosed early. Only 6 months passed between Peters initial genetic testing and receiving his diagnosis. Many families we have met, talked with, or read about go years misdiagnosed. Again this allows to focus on what is important.
- We had Jacob tested and he is only carrier of the disease and will not be affected or have symptoms.
We appreciate your love, prayers, and support as we walk this journey. Please reach out if you have any questions.
