Everywhere I look, I see people saying 2016 was the worst year. I get it. There is no doubt 2016 was extremely difficult for us. You guys have watched Maggie push through so many obstacles that Rett has thrown at her. The past few years, we celebrated her accomplishments more than not.
Then 2016 happened. It was a very hard year for her, and you watched as she lost so many skills, walking, balance, hand function and breathing normally. She is still fighting to get those skills back. She is walking better, but needs more assistance than before. Her balance is getting better, but she falls more often, so needs more assistance. She lost all of her hand function except being able to grasp a fork momentarily with her left hand. Her breathing has its good days and bad. On a good day, she hyperventilates and breath holds fairly often. On a bad day, it’s nonstop and painful to watch and scary for her. She is mentally stronger than I could have ever imagined. This little girl will not give up without a fight, I’m talking hanging on to a cliff by a fingernail and pulling yourself up, kind of fight.
2016 wasn’t the worst year of our lives. So much greatness happened as well. Grayden came into our lives and we couldn’t have needed him more. Maggie loves her brother. Grayden loves his sister. We love them both. Our family is complete. This strong, funny and curious little boy will learn so much from his sister.
THAT’S NOT ALL…
The science for Rett Syndrome is moving fast. Maggie participated in a clinical trial this year for Trofenitide. It wasn’t easy but she showed us it was worth it. We had to drive to San Diego 3 hours away 8 times in 10 weeks, I think. I don’t remember anymore. We made each trip a family vacation and made the most of it. Maggie played on the beach, swam, hiked with family, and surfed. She really loved surfing. Grayden learned to roll over, sit up, and crawl at the same time.
THAT’S STILL NOT ALL…
Hello, Mark Zuckerberg! AJ’s and Maggie’s videos reached some pretty influential people this year. So Magnolia’s Hope really brought the awareness this year. Very excited about that. AJ works on fundraising year round for various events but his biggest event is the Reverse Rett LA Gala. He won’t stop until we raise enough money to cure Maggie and all of the other girl’s with Rett. I’m right behind him, actually next to him. We are Partners in Crime. I spoke at the event, thought I bombed, turns out everyone was crying.
We truly are thankful for everyone that follows our blog. Watches our videos. Shares our story. Donates money. From the bottom of our hearts thank you and please hang in there with us. We will cure Rett Syndrome, but we aren’t there yet. We look forward to sharing our story with you in 2017, and we are hoping for more highs than lows this year.
We always say Maggie is the reason we will win this fight. But truly it’s our Magnolia’s Hope village. Thanks for your support, tears and willingness to donate. Love to you all. (written by Jenny)
Happy New Year!
AJ, Jenny. Magnolia and Grayden
PS. You might see more blogs and videos from me this year. AJ’s work schedule just got busier.