1. Andy's diagnoses

Dear Family and Friends, 

We wanted to share some news that will be upsetting but wanted to be able to let people know in a succinct and compassionate way as we will be relying on our family and inner circles for support. Last month Andy had a genetic test done so that we could better understand his needs. On Friday, September 29, we got the results that Andy has 2 very rare neurodegenerative disorders, Batten Disease and Sanfilippo Syndrome. There is no cure for either of these and it is unknown what the combination of them will mean for Andy other than they both severely limit his lifespan. 

We are obviously in need of love and support from all our people and are trying to make sure we control the narrative that gets around. Here is a brief summary on the two conditions: 

• Batten Disease is a genetic disorder. It typically develops symptoms in late toddlerhood/early childhood. It presents as kids begin losing skills they previously had. It basically attacks the spine and legs as well as causes blindness. Children typically lose mobility and skills leaving them bedridden until death.

• Sanfilippo Syndrome is a genetic metabolism disorder. It leads to serious problems for the brain and nervous system- essentially kids' version of Alzheimer’s. It will likely cause Andy quite a bit of pain somewhere down the line as the disorder manifests. 

Currently, we are  looking for “what’s next.” Right now, we have a team of family and friends: 

• researching these disorders

• trials for treatment - there is no cure for either, but we are looking for treatments that can help keep things from developing quickly or can treat some of the symptoms 

• financial planning- at this time we are not in a place to discuss fundraising of any kind

• doctors/specialists. 

• We are also learning about communities of support that are already dealing with these disorders within their family. 

We ask that people don’t go Googling and send us stuff they’ve found- it won’t be helpful and will get overwhelming. But if you have connections to any of the items listed above, please reach out and let us know via Allforandykap@gmail.com This is a new email we created specifically to communicate Andy's conditions. 

There is a lot we don’t know right now. We ask you to be patient as we figure out our needs. We will come back with more information after some appointments later this month.

Here is what Jordan knows so far, please stick to this language when speaking to him (this also is a nice guide for talking to other littles in our lives):

Andy had a test and it told us why he is the way he is. He will probably always act kind of like a toddler even when he’s a big kid. What we found out made mom and dad scared, sad, and nervous because we have lots of questions but don’t know the answers so that is why Jordan might see us cry while we talk. We also told him this will likely be why other adults we talk to might be crying as well. Andy will have lots more doctor appointments and tests and hospital visits. Jordan was also warned that there will be times coming up where it will feel like Andy has more attention than Jordan is getting. Jordan can advocate for himself by letting us know when he feels he needs some extra time or in need of attention. 

Please note, we are not directly discussing the loss of time and life with Jordan at this time

Here is what you can say as you are talking about this to your own support network. We don’t want anyone to suffer silently and encourage our friends and family to reach out to their own people. It can be hard to know how to explain things to others so we came up with something short but to the point:  

Andy was given a genetic test that resulted in the diagnosis of two neurodegenerative disorders, Batten Disease and Sanfilippo Syndrome. There is no cure for either of these and it is unknown what the combination of them will mean for Andy other than they both severely limit his lifespan. There is still a lot we don’t know including the steps moving forward. 

Please get used to saying “I don’t know,” when speaking to others. No one here are experts and no one here can predict what the future looks like. We just don’t want speculation to become rumor to then become misinformation. The point is we don’t know what the next steps are and that is very scary, and it’s normal for that to be your response as well. 

We know so many people will want to reach out and offer help. At this time, we just want love and support (unless you have connections to the above list). This is a difficult time but we want to focus on the love we all have for Andy and each other. We want to make sure gatherings, like his upcoming birthday, are filled with joy and making memories, not sadness. There is so much joy and life in Andy right now, we want to be sure that is reflected back to him. And please keep Jordan in mind, he loves his brother deeply but also is a kid who needs just as much love and affection. We all just need soft places to land these days and to know you are all in our corner is deeply comforting.