Hi Friends and Family,

  We are over 6 months past diagnosis, so I thought it would be a good time to do a journal entry. I will start with birthday/fundraiser updates for those interested. If you're ok with crying, continue reading for more health updates and emotional journaling. I'll admit it, caution entering the 4th paragraph and beyond, lots of tears were shed. This site was originally created to be my journal, so I let it all out below.

Olivia's Birthday/Fundraiser is set for Saturday December 3rd from 10am to 1pm at St. Paul's Lutheran School in Muskego (Trinity Cafe & Gym). We will have 3 bounce house options and fun toys in the gym, a face painter, a craft corner, food, beverages and cake). All are welcome to join, please RSVP on Facebook (check your Events tab, the notification often gets lost amongst other things on FB). If we aren't friends on FB, or you didn't get the invite and want one, and you haven't already talked to me, please let me know if you plan to come by so we can have a good head count for food.

Olivia's fundraiser video is ALMOST ready to go. Tyler and I have not yet seen it, and we are so excited and nervous. Tyler and I will likely watch it the weekend of Thanksgiving.  At her birthday party, our hopes are to sing Olivia Happy Birthday at 11am and then all watch the video if we can get it projected. Her video and website will launch that day. That website will be where we want you to donate to and share with everyone. That website will be open indefinitely, so it is likely where we will continue to provide video updates on Olivia. So there is no immediate need to donate that exact day, but we'd love to see the momentum we can create within the first week. We will ask that you share her video with all your friends and family. Our desire is to reach as many people as possible. Research and clinical trials for rare diseases are very costly, without much in it for the drug companies, hence the reason why parents like us are the main fundraisers.

Time is not on Olivia's side. When she was diagnosed, I heard a lot of "Oh she's so young, she'll be a great candidate for clinical trial, as the disease hasn't fully taken over yet," from other Sanfilippo parents. Unfortunately, we just have bad timing as nothing has been available to her. There have been many enzyme replacement trials and gene therapy trials in the past, but they come and go for a variety of reasons. We do know that previous clinical trials, while not fully successful in "curing" the disease, have improved the quality of life for children and their caregivers. We already see Olivia falling further behind her peers in terms of her speech and communication skills. We see older kids with Sanfilippo syndrome struggling to walk, completely losing their speech, have difficulty eating and get put on feeding tubes, suffering seizures, and we've already seen several warriors pass away in these 6 months. We just fear watching our little girl fade away without a fair fight.

So that is why we are launching this fundraising video. We will be able to help pick which Sanfilippo research/trials this money goes to. We are fighting for our little girl's life, and we cannot do this without you all.

Olivia is now seeing speech every week, OT and PT every 3 months, she sees GI, ENT, cardiology and her geneticist. We are being scheduled into the neuropsych clinic in early 2023, where we have a 1 hour parent interview with the physician, followed by a 4 hour appointment with Olivia a few weeks later. We are going to see the pediatric eye doctor, an osteopathic doctor, and a special needs clinic for help with medically complex kids in 2023. It is so overwhelming when I think about it, but we are trying to focus on the day to day. We are still awaiting approval for secondary insurance, Katie Beckett, which will not only help us cover copays, but also open the door for more waiver programs for activities adapted to Olivia's abilities. Olivia is still sleeping well for us, though getting to bed can sometimes be a struggle (but what toddler doesn't struggle with that?). She has been sick a lot this fall, but overall, we would consider her very healthy. She smiles a lot, has really learned how to giggle at new things, and picks up on new words often.

As difficult as these days are, I am really trying hard to be happy and live in the moment. I do know I will look back at these days and talk about the "good times." After the devastation that came along with her diagnosis, and the grieving of what we thought Olivia's story would be, I have found myself crying a lot less. My new challenge is really trying not to feel bad for her and our family. I still have really sad days sometimes where I break down and get mad and ask why. When you're in the trenches of motherhood, changing your 1000th diaper and cleaning up vomit at midnight, you have a small light ahead, where you see your child "growing out" of things, the unfun, hard things. I know every phase of parenthood comes with its own challenges, but my current struggle is feeling like that small light ahead has been put out. Changing diapers, dealing with communication and feeding issues, sickness, car seats, dressing Olivia, putting her shoes on, carrying her to bed is forever going to be our life. "This is not what I signed up for" comes across my mind a lot. But Olivia didn't sign up for this either. We're here fighting for her, because we have no other choice. We are strong for her, because we have no other choice.

I am praying that through this fundraiser, and all the other fundraisers put on this year by parents of children with Sanfilippo Syndrome, we can gain some momentum and get the ball rolling on a trial. We desperately need something to look forward to. A little light, if you will.

If you made it here, thank you. Please know that we have felt all the love you've shown to our family this year. We are so grateful 💜