Jumping through hoops to help prevent another child witth hlhs

Since we have learned what hlhs is and how life changing it can be, we want to stop another family from suffering the same fate. We participated in several studies at CHOP when Olivia was first born, but wanted to do more. Brett found out about a research study that the Mayo Clinic in Minnesota is performing and applied. It studies genetics of the entire family including siblings. We received boxes in the mail and were supposed to simply bring it to a lab to be drawn. Simple enough, right??? How wrong we were. We made appointments at Quest. When we got there, they told us they dont draw bloodwork they dont process. We then called several other lab collection placea. No luck. Finally, we called and just went to the kids pediatricians office. When we got there, no one knew how to collect the blood and not charge us. They were able to locate someone who knew what to do and it was time. Olivia went first. She did great for the volume needed. Next was delilah....tears were flowing, but she didn't completely freak out.  Nathan was last and laughed during the blood draw. He was thinking horrid thoughts ahead of time, so when it  was nothing...he couldnt help but laugh. We packaged it all up, labelwd it correctly and went to get stuck ourselves. It helps to know people, because when we got to the lab a phelbotomist who knows me came out. He gladly drew Brett and my blood and even remembered us being on the news. Brett had a little more difficulty with the stick and a little digging but held it together in front of the kids. Finally we were done or so we thought.
We went to fedex but they dont accept blood for shipping at all locations. We found out where to bring  them and finally we are free of the ordeal.
It is really sad that in order to help others, it cant be easy. It hasn't deterred us though. If the opportunity comes again...we will do it in a heartbeat. Our olivia is here because people 25-40 years ago let doctors research and study their babies.