Hello everyone. My name is Leslie Bertram. I am not a Knight but my husband is a volunteer firefighter. I have emailed I believe to be the central director. Just to tell you a little of what's going on. We have a 2 year old little girl who has been diagnosed with a disease called Spinal Muscular Atrophy Type II, SMA is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
Spinal Muscular Atrophy (SMA) is the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.
WHO IS AFFECTED
SMA is one of the most prevalent genetic disorders.
* One in every 6,000 babies is born with SMA.
* SMA can strike anyone of age, race or gender.
* One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chances of developing SMA.
* 7.5 million Americans are carriers.
THE TYPES OF SMA
SMA Patients are classified into four types based on milestones achieved at onset of SMA. Type I and II are the most prevalent.
* Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I cannot sit without support.
* Type II affects infants between seven and 18 months old. Type II patients may be able to sit unaided or even stand with support. They are at increased risk for complications from respiratory infections.
* Type III, also known as Kugelberg-Welander Disease, is the least deadly form of childhood-onset SMA. It strikes children as early as the age of 18 months, but can surface as late as adolescence. Type III patients are able to walk, but weakness is prevalent. Most patients eventually need to use a wheelchair.
*Type IV is the adult form of the disease. Symptoms tend to begin after age 35.
SMA does not affect sensation and intellectual activity in patients. It commonly is observed that patients with SMA are unusually bright and sociable.
August is National SMA Awareness Month. This is when I'd like to get all the chapters possible involved. In hopes of this year. But if not at least next year.
I would like to get a ride put together for her. For the medical part of it all. We are getting ready to have to purchase a $20,000 wheelchair. Just a small part of it all.
But my ultimate goal would be to put a ride together and all profits go to the research. This is our only hope to keep from losing our kids at a very young age. I know all of you do the MDA drives. This disease falls under the MDA. We support the MDA now lets give a hand to the SMA. I'm sure some of you have even been touched by this disease.
I know this is going to be a long and hard process. But I'll put everything I've got into this. I am now a stay at home mother to take care of our children. I will do anything to help my daughter and others like her. Right now I'm waiting to hear word from the Indiana President. If you guys can help me get this started I would greatly appreciate it. I'm just trying to get my idea out there. In the hopes that it is possible!!! If any of you could bring this up to a few other people, it would help.
Also, if you would like any more information on this feel free to ask!!! My husband is also trying to get somewhere with this on Firefighter Nation.
Thank You and Stay Safe,
The Bertram Family