The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took my breath away. I froze for a moment. My hands were shaking. Since Maggie was diagnosed, I had hoped I would read those words one day.
Rett Syndrome will be going to gene therapy trials. Its not if, its when. That is huge. As always, thank you for being our support. We are not there yet, and we will need more help. But we will get there, with a little bit of pixie dust.
Monica at RSRT wrote a blog, that is honest, hopeful and informative. She discusses what a gene therapy trial would possibly mean for us. Read that blog here…
There is so much hope. Take the time to read the initial press release here. It is worth it.
Pixie dust goes here
Holidays can be stressful. All holidays. Right now, Maggie is so exhausted from her new seizure medications, on a day to day basis, we never know what to expect. There are plenty of days, we find ourselves tied to the house because Maggie is too tired to do anything. So this past weekend we really didn’t know what to expect.
Saturday morning we woke up and she was tired but also asked if we could go on a hike. So we did. The best part was, she was insistent that she walked with our friend Eric. She told us we would be allowed to walk near her but not with her. If he had to carry his new baby, then she would walk with our friend Leslie. I told Eric when we got to the nature trail, what Maggie’s plan was, he was happy to oblige. Maggie just loves him, I think she loves his french accent and how much attention he gives her. It was a fun hike.
Sunday,AJ wanted to fix some stuff around the house. Maggie and I headed to the zoo while AJ stayed home with Gray and fixed the sprinklers.
At the zoo, we usually look at the larger animals, but Sunday we decided to go to the petting zoo area. Maggie really wanted to pet the goats and she actually kept trying. There was a goat following us around wagging his tail and she finally got to pet him. After the petting zoo, she was so tired, she fell asleep in her push chair. So I sat in the shade for the next hour and just crowd watched. She started to get warm, so we left. By the time we got home, Maggie was overheating, so when I walked in the door with her and she was melting down, AJ decided to jump in the pool with her and we had an impromptu swim party.
Monday we had a few friends over, she swam, we ate BBQ, Maggie and Gray napped, we swam again, we ordered pizza. It was such a fun and relaxing day. Maggie went to bed smiling. This is honestly a picture of her in her bed smiling before falling asleep.
I could not have been more thrilled with our weekend of excursions. There were no seizures, minimal exhaustion and just happy kiddos everywhere. Fun weekend aside, the thought is never lost on us, that we live in a country that affords us the opportunity to live freely.
I hope everyone had a nice Memorial Day.
“Freedom is never more than a generation away from extinction…”Ronald Reagan