Well, it has been sometime since we updated anything for Harper. We just wanted to post and share a few pictures of our crazy, busy summer. We have been enjoying all the memories we are making. We have taken sever trips, spent lots of time outside, had lots of appointments, had the first Hop for Harper, and so much more.

Harpers health has been pretty good. She had a few spells of a stomach bug and ended up with strep again. It has been just over 6 months since Harpers diagnoses.  She has been seen by all her doctors to do routine check-ups to get baseline information. Her doctors are all very pleased with how she is doing. She was sedated in May for a hearing exam and ABR. She received a new prosthetic eye over the summer and got new ear molds for her hearing aids since she has out grown her old ones. She is currently waiting for a new hearing aid to come in as it was lost while playing.

The latest appointment we had was with Harper's Geneticist. He is continuing to keep Harper his main priority as her disease can progress fast. There are still currently no treatments or cures. We are hopeful for the future for these kids as two different companies are working on upcoming trials. Raising money for the Cure Sanfilippo Foundation is become one of our main goals since they are the ones who help get trials up and running by funding and working with the researchers. 

In May we visited family in St. Louis. We went to the zoo, celebrated a few baptisms, and played with cousins. We got to meet Gianna and her family. Gianna was diagnosed 2 years ago with Sanfilippo Syndrome. They are an amazing family. We can't wait to see them again. In June we took a big trip to Florida. We went to Disney World and stayed with our friends in Sarasota. While at Disney we got together with two other Sanfilippo family's. This was lots of fun. Victoria, Lyra, and their families were all so sweet. The girls all played really well together. Got to grab dinner together and walk around downtown Disney. In Sarasota we got to enjoy seeing Haley, Nahin and the boys. We love getting together with them. The kids had a blast running circles around the house and playing outside. We look forward to going back to visit! 

July was the first Annual Hop for Harper. This event was thought up by John and I to raise money for Sanfilippo Foundation. Our friends and family took the event and wanted to raise money for our family so they got together and put it on this year.  We can't thank them all enough for all the planning and organizing that went into it. The event had inflatables, ball pit, bouncy animals, face painting, food trucks, live music, silent and live auction, and merchandise. The turn out was amazing. All the kids had a blast! The Weigert family got to come and enjoy the beautiful day with us. AJ and Sean are brothers who both have Sanfilippo Syndrome. They only live about 45 minutes from us. AJ was up dancing to the music while Sean was a little tired.  The event was a huge success. We were able to donate $25,000 to The Cure Sanfilippo Foundation. Raising awareness and money is the only hope we have for Harper to have any chance. 

The end of July we went to the First Annual Midwest Sanfilippo family gathering. We got to meet several other families and share our stories with them. Being able to talk to other parents who are going through the same thing seems to help a little. It reminds us that we are not alone on this path. As terrible as this disease is, support from these families helps us get through so much. We finally got to meet Liv and her mom Erin. Erin's tik tok of Liv is the reason we found a diagnosis for Harper. Though we are absolutely crushed with the diagnosis, we now understand the why for so many things. Erin and Liv are both so sweet. Liv even let me hold her for a little bit. She has a beautiful smile and is a very happy little girl. We can't wait to plan another trip to see them.

September we went to Chicago to visit our friends Dannon, Hailey, and Ivy. We enjoyed swimming and enjoying the beautiful weather. Our friends took us all to our very first Cubs game. Everyone enjoyed it, even in the heat. Harper did so well looking out for baby Ivy and even held her. The girls each got a Bitty Baby from the American Girl doll store. They love taking care of their babies at home. 

We have been taking lots of pictures and videos so that we never forget how amazing our little girl is. Harper is still doing PT, OT, and speech therapy every week. We continue to see progression in many areas. She likes to be very independent and does most everything on her own. She has become a very fast runner, so keeping her out of danger in parking lots is getting more difficult. We have gotten a harness to help with the running. She has started back to preschool and is doing very well. She has the same teacher as last year and gained a one-on-one para to help with her.

We will try to do better at updating as she continues to grow and see the doctors. With the holidays among us, we know we will continue to be very busy. 

Our family is very thankful for the love and support from everyone!!

Love,

The Jamison Family