I have written about my friend Laurel, who has Rett Syndrome, before! I have been spending time with Laurel for my service learning project & it has been so neat to spend time with her and her family. I was spending last Sunday afternoon with Laurel & her family. Laurel & I went on a walk, had DELICIOUS burgers made by her dad, & did bath time! Laurel receives food from her feeding tube twice a day, but also eats a bit at meals. She is a professional messy eater to say the least but loves dessert the most! When it was bath time, Laurel shut down & had tremors, which is a characteristic of Rett children when they're nervous. Her whole body tensed up including her little fists & after 5 minutes or so of trying to get her in the bath, we decided it just wasn't the night for a bath! This doesn't happen all the time, but small things can trigger Laurel's stress, and that night, a bath was one of them!
I spent an hour or so in the living room with Laurel's family, talking about her diagnosis. Her mom said they knew something was going on when she stopped meeting normal age milestones. She was originally able to bottle feed herself & sit up, but these things began to deteriorate with age, which is obviously uncommon and troubling to parents. After seeing several doctors & finding no answers, Laurel's parents went in & told the doctor after doing their own research that they thought she may have Rett. A simple blood test confirmed this & Heather (Laurel's mom) said that was one of the worst days of her life. I made a comment about how I am sure she wouldn't change Laurel for the world, to which she politely replied "no, I think I would. I would never want my child to have to live like Laurel does if I had a choice." I was kind of shocked when she said that, but after thinking about it, I can see where she is coming from. No parent would ever wish a disability upon their child. I made an assumption of Heather that was unfair, and hearing Heather talk about it was really valuable.
Lastly, Heather spoke with me about one of Laurel's friends who is in a Rett treatment trial in Boston. Because travel & housing costs aren't provided and trial patients are traveling back and forth for an entire year for tests and treatment, Laurel's family wasn't able to afford the trial. They sounded very interested and also disappointed that they didn't have the resources to get Laurel into the trial. I was given a glimpse into the sadness & hardship parents of children with disabilities face.
I have included a link to Laurel's website, which has her story & a couple really cute photos.
I spent an hour or so in the living room with Laurel's family, talking about her diagnosis. Her mom said they knew something was going on when she stopped meeting normal age milestones. She was originally able to bottle feed herself & sit up, but these things began to deteriorate with age, which is obviously uncommon and troubling to parents. After seeing several doctors & finding no answers, Laurel's parents went in & told the doctor after doing their own research that they thought she may have Rett. A simple blood test confirmed this & Heather (Laurel's mom) said that was one of the worst days of her life. I made a comment about how I am sure she wouldn't change Laurel for the world, to which she politely replied "no, I think I would. I would never want my child to have to live like Laurel does if I had a choice." I was kind of shocked when she said that, but after thinking about it, I can see where she is coming from. No parent would ever wish a disability upon their child. I made an assumption of Heather that was unfair, and hearing Heather talk about it was really valuable.
Lastly, Heather spoke with me about one of Laurel's friends who is in a Rett treatment trial in Boston. Because travel & housing costs aren't provided and trial patients are traveling back and forth for an entire year for tests and treatment, Laurel's family wasn't able to afford the trial. They sounded very interested and also disappointed that they didn't have the resources to get Laurel into the trial. I was given a glimpse into the sadness & hardship parents of children with disabilities face.
I have included a link to Laurel's website, which has her story & a couple really cute photos.