Undiagnosed Disease Program Update

The past couple months have been overwhelming to say the least... I've probably said that already. I'm really struggling to find my bearings and even stay totally present in conversations. Layla's actually been sleeping better (*knock on wood) generally and that has been great but I am still completely exhausted both physically and mentally. Getting to know the nurses who will be working regularly with Layla has been amazingly helpful. But also sad for all the support we didn't have for so long. Sharing our story of the transition from Ontario to BC specifically has shown concern. We are so far behind when it comes to specialists and support. These things should have been in place right when we got here but have taken well over a year to start happening.. Yesterday I had one of those distressing episodes. I was calling multiple specialists regarding Layla's new suction machine we are getting for home (to help manage her secretions and vomit, so that she doesn't have as high of a risk of aspiration), and each one said they weren't the right person to talk to but couldn't direct me. Finally I did figure it out, but I just kept thinking, It shouldn't be this hard to just get some questions answered. I should know exactly who to speak with about this. But I don't. That feeling of someone else's wellbeing being completely on your shoulders can be hard to bear at times. I spoke with the nurse and Layla OT and Speech Therapist about this and they are going to follow up on our referral to complex care at Children's. Apparently that is part of their role, to help parent navigate who to talk to and when and answer questions. So yay! Can't wait until that is through.
Anyways, that's my beef, but back to the update. We spoke with the Undiagnosed Disease Network (I am just going to type UDN from now on), going through our consent forms. Once the consent forms arrive back in California then they will send up all the vials and things we need to all get our blood work done. Once the three of us have gotten that done, it will go back down to California for them to start their research going through each of our genomes. This will help them decide exactly which tests they want to do when we are on site. Because of the order of events we will not be going down to California until late spring. Surprisingly I wasn't at all upset that the date is much later than we originally had though. With the amount of things that have been going on lately I'm very happy to wait. Plus, it's not like they're not working on Layla's case during the wait time. They are.
They're hoping to find the funding to pay for all three of us to go down. Normally they only cover one parent and child and require them to get to a major american city but our contact said he's going to try and get all three of us covered and fly us from Vancouver. If we do have to pay for one parent, it is only to LA now, which is usually not too expensive, given the shorter distance. We will come up with the money.
When I asked how many patients they've had go through their site at UCLA I was insanely surprised by the response. 25. Only 25 people have gone through the program at this site. Granted they have 7 other locations across the states but still.. This is an international program.. anyone, anywhere in the whole world can apply there and Layla is going to be the 26th. Talk about mind-boggling. Obviously, I don't understand how rare Layla is. To put it in perspective, there are approximately 500,000 people are living with cerebral palsy and 400,000 people living with down syndrome in the US alone (thanks google).. and we don't know any one other person like Layla. Sheesh eh?
It makes me nervous to go down to the states but still so intrigued. What the heck are we going to learn about this girl?