It's been a year since you passed and so much has happened, so I wanted to write you this letter and catch you up.
I made it to Italy and gave my talk to the congress, I shared our story daddy
I met with PTC and UniQure Pharmaceutical while I was there and we spoke about their trials.
It wasn't all work, I got to explore the Bologna with Jenna one evening and a little the next day before I flew home.
5 days after Italy I went to Marrakesh, Robyn and I did it, and we hiked 50km in The High Atlas Mountains, It was amazing daddy, I’ve never seen anything like it. You'll laugh Daddy, I ended up on crutches for 3 days after it!
Things got quiet for a while Daddy, but then I got bored and decided it was time for another trip, I went to America for Christmas and spent it with Auntie Vicky and everyone over there. Of course, Hunter took me snowboarding. I'm getting good Daddy, but 3 days in a row was a lot!
I got home just in time for NYE Daddy, Ryan, Kelsey Hannah and I went to Bingo Loco. Yes, Daddy, it's as crazy as it sounds, bingo and a massive party! You always wanted to party Daddy.
Ryan, Kelsey, and I went to the hunt ball Daddy, We scrubbed up well! Ryan even smiled for the photos, but I think that's because they were with Kelsey.
I got the most amazing email, Daddy, UniQure asked me to be featured on their promotional material, they want to send a camera crew over to film me and take photos!
Daddy, I am a published author, can you believe it, I shared our story and it is published in a book with 26 other authors! In the first few weeks, we sold 400 copies!
Things got quiet again for a while Daddy, but my suitcase was lonely so I thought I'd take it on a trip. This was a big day, I hope you're proud. I went to the HDYO congress, and it was amazing! I made so many new friends and met loads of people from the community I spoke with online over the years. I gave the opening speech at the Glasgow City Chambers in front of the entire congress! Can you believe it Daddy - I was so nervous, but I know you were there.
I spoke about the power of social media with two of my friends and facilitated break-out sessions, I wanted to help people daddy.
I cried on the last day, it was so sad saying goodbye to everyone - and then everyone made me cry more, I won an award for most inspirational!!! Can you believe it, Daddy?
It was a busy weekend because the day after Congress ended I met with WAVE Life Sciences and spoke to them about a drug trial they have going on. I can't believe I got these opportunities daddy, You always taught me to never give up.
I spoke with UniQure at the event and they asked me to go to Amsterdam to speak to their Head Office and share my story with their staff.
It wasn't all work though Daddy, Charlie, Shaun and I went to the Zoo the day after and it was so much fun!
May was mental daddy! I was so busy! The guys from UniQure came over and we spent the day snapping photos all over Fermanagh! I even got some awesome photos of Ryan and me on the bikes!
Mummy and everyone threw me a birthday BBQ at the house, Vicky and Sarah flew home from America and Sarah brought baby Simon. He’s so cute! It was a fun night, so many friends and family came and wished me happy birthday. I wish I could have come to visit you, Daddy.
I went to Amsterdam and gave my speech Daddy! It was so cool; everyone was so kind and listened. They're trying so hard to find a treatment daddy. I hope they do. I got to wear a lab coat and tour their lab! They organised a VIP lunch Daddy, and guess who the VIP was... ME! I wasn't the VIP, they all were, because of the amazing work they do.
We rented a boat for the rally this year Daddy, 5 of us! Guess what Daddy we won the trophy for best kept boat (I think). Remember you won it the year of the 50th anniversary. John G won your trophy Daddy! You'll always be on the rally now. I'm so glad we presented the rally with a cup in your memory. That was your happy place.
I joined Crozier Memorial Daddy; The pipes are so hard to learn but I'll keep trying! I've been parading this summer with the tenor drum, it's fun but by gosh it gets heavy! I wish you could see me in my uniform Daddy. It looks so smart.
I went to Sorrento Daddy, Mum, Vicky, and Debbie came and it was beautiful. I've never seen anything like it. I can't wait to travel more Daddy. Sorrento was super-hot! I think I almost melted, but it’s a trip I'll always remember.
I met someone, Daddy, he's so good to me and makes me happy. You'd like him! I think you would approve. We went out on the boat for the night. Ryan tried to kill him in the tube I think (it was a little funny). Let's be fair, you would have done it too. We're going on holiday soon, i can't wait to sit on the beach for a week!
I got a new job, Daddy! I love it, it's what I want to do. It's been a few weeks, and everyone is so friendly. I think I finally found what I wanted to do. I hope you are proud Daddy.
I can't believe it's been a year, Daddy. I miss you so much and there's not a day I don't think about you. It's been so tough Daddy, but I know you watching over me.
I wish you were still here Daddy, i wish I could tell you all this in person and show you what I've been doing.
I love you, daddy.