If you have been following Emmett's Journey for a while, then you know a bit about his parents. They are an absolutely amazing couple who are doing everything that they can to be the best parents that they can be. It is quite possible that they may be busier than most parents of a couple of kids. They just happen to have a youngster with a rare disease. A genetic disease called Spinal Muscular Atrophy, Type 1. Did you know that Monday, February 28th is Rare Disease Day. Here's hoping that this blog helps you to be a bit more aware of the challenges that families face as they raise a child with a rare disease.
For example, on Tuesday the accessible van will be packed up with Emmett's power chair (by the way, Emmett no longer sits in a child car seat, but he sits in his power chair. We went to the Sidewinder van conversion showroom/garage/fabrication shop and not only did we get a tour but they showed us how to properly use the special wheelchair seatbelts to keep Emmett secure in his van while staying in his power chair. We will be taking the van back to Sidewinder in a month or so to get some maintenance done on the wheelchair bay. We need to keep it in tip top shape.) but also two suction machines, his bi-pap machine (unlike a c-pap machines one way function, a bi-pap blows in but also pulls out! both ways), his food pump, his back brace, his AFO's and his bathing suit. There is a bunch of other stuff for sure, but the most important will be his bathing suit so that he can go swimming. Oh, and we cannot forget his bunny, Floppity Moppity Bunny.
While there will be swimming and fun, all of the packing of this trip is so that Emmett can get to BC Children's Hospital for his next lumbar puncture and injection of Spinraza. This happens on Wednesday, March 2, 2022. Did you realize that Emmett was one of the first kids in Canada to receive this rare drug for his rare disease. In fact, when he started getting this drug it didn't have a name and it was a blind study that involved just over 120 kids from around the world. It was an experimental drug. And it worked. And it keeps on working and a few years ago was approved for use in Canada. And the BC government has just approved a second drug that can work with people who have the rare disease known as SMA. All because people are aware that individuals with rare diseases need our support. And we need to support the parents and families of these individuals with rare diseases - because the workload is immense.
But in addition to Rare Disease Day. In addition to Emmett's 26th Lumbar Puncture. It is Alisha's birthday! Today, February 27th, 2022.
So today, or when you read this, reach out to Alisha via any means that you have to wish her a happy birthday. I'm not going to say much (and I'm absolutely not saying her age) because I did not ask her if I could write this blog post and I know that this will she will be slightly embarrassed, but this amazing woman who is so dedicated to her family has to be recognized today. She won't tell you about everything that she does. To her, she is doing what any mom would do. And that is absolutely true. But as her mom and dad, we see her going non-stop with both of her boys and do not even know when she sleeps. We love her. Happy Birthday, Alisha. You are an amazing mom and daughter! Love You Forever!
Note: the top photo of Alisha and Emmett is from quite a few years ago. The lower photos are: Alisha and Emmett; Alisha and Theodore; Theodore and Emmett.