Saturday, May 2, 2009

Notes from the Girls

Maybe it's the gloomy weather in Denver today, but I'm feeling very down.

As you might know (or, unfortunately, more likely have no idea) May 11 is National ALS Advocacy day and there will be meetings and a walk in Washington DC to raise awareness for this abominable disease and to hopefully get someone in Washington to understand that the disease is not only catastrophic to the families and circles of people that it touches, but also that it is underfunded and remains therefore: incurable, untreatable and fatal.

One of my FB friends suggested that we send our stories to them to carry with them on their walk and give to whomever they can find to hear them. Hopefully, the tragedy of this will touch them enough to make some changes.

To those of us affected, it is very frustrating to hear that something like the "swine flu," which is very treatable and rarely fatal can generate the gross media attention and $1.5 BILLION dollars in Federal funding within a few days, while a disease that is always fatal, kills thousands every year in the US and wreaks complete havoc and suffering on families for multiple years on end will get a whopping $45 Million from the Feds this year for research, most of which will get spent on theory and possible causes and not on treatment or cure options for those already suffering. The total amount of funding for ALS represents about 3% of the money approved this WEEK for this sensationalized "possible pandemic." This $1.5 billion is IN ADDITION to the $6 BILLION already allocated to the federal budget to fight any pandemic. What the hell happened to the first $6 Billion???? So, federal funding for ALS overall represents a full six tenths of one percent (.006) of the money they will allocate towards ALS. It honestly makes me want to throw up.

This comes a couple of weeks after we were told that only a few (literally, I heard less than 10) people are getting IPLEX based on the restrictive IND ruling by the FDA, and OH BY THE WAY, we MIGHT be able to get this unproven, thinly tested and anecdotally lauded drug from some pharmacy in Canada. The price? $10,000.00 for one month's worth of doses. Nice.

I told the girls about the ALS walk in DC and asked them to write stories in their own words about what we are going through with hopes that someone will listen that has the power to make something happen. Here is what they said (in their own words and spelling...)

First, Jillian who just turned eight last week, two days before H's 41st birthday. When she handed her paper to me it was wet from tears.

"ALS: My mom has had ALS for 2 years and I really want her to get better. Please give some money to the scientists. I really want my mom to hug me and pick me up. My mom can't walk so my Dad has to carry her up and down the stairs. I do not want my Mom to die, so give her another chance at life. Please. Jillian, Second Grade"

Next, Rachel, who is 9 "and a half."
"Dear Congressmen,
My mom has ALS. ALS is a disease that eats your muscles and once all your muscles are gone you die. It is very hard at home. Every night my dad carrys my mom up the stairs and if he falls, they both could get extremely hurt. My mom is always in a chair, a bed or a wheelchair. When we go to places my mom usually get very tired. When she gets a shower, my dad carrys her into the shower and washes her. She uses a bucket on a stand for a toilet and then we dump it in the toilet and rinse the bucket in the sink.

I really miss my mom and I knitting together, dancing together, cooking together and exersizing together. This is a terrible disease for many familys and it needs more money to find a cure for it. Thank You, Rachel, 9 years old (4th grade)"

Finally, Shelby who is 11.
"Dear Congressmen,
My family is going through a really hard time right now. My Mom has a disease called ALS. ALS is a disease where your body gets weaker and weaker and your muscles don't work, then eventually you can not breathe. It is very hard for our family because of this disease. My Dad has to carry my Mom up the stairs two times a day every single day. He also has to give her a shower, feed her and many other things. My mom also gets very tired and sad. She used to be able to do may things! She used to be able to climb fourteen-thousand foot mountains and dance with us every single day. She could run marathons and go everywhere with us. My mom has had this disease for three years I ask you to please help out our family and many other families too. Thanks for listening, Shelby, Age 11, 5th Grade."

I will send these letters out to a friend who is a big advocate for ALS on the East Coast, and she will carry them along with pictures to DC and give them to whomever she can find that might listen. We wish we could go out to support the cause and walk with everyone, but travel for us is extremely difficult now.

Thanks to everyone near and far that are supporting us and all the other people out there who are dealing with this dark shadow over their lives.



  1. All of us who registered for National ALS Advocacy Day have appointments on Capitol Hill with our constituents. I will make it my mission to have Heidi's story heard. I am exactly Heidi's age which makes it all the more heartbreaking to me. If I had children, I might be able to try and put myself in her shoes. All I can think of, is to look at the Senators & Congressman from Colorado and to fall flat on my face in their offices, and then to stay there until they promise to do something.
    I too have spent the week disgusted at the swine flu propaganda and all the attention it garnered. For what? 30,000 people die every year from ALS. Is this not a crisis? 300,000 people are suffering, paralyzed except for their eyes. Veteran's with ALS are receiving monthly payments from the Gov't. because they are getting ALS 60% more often then the general public. The Gov't knows ALS is a horrific disease, but they haven't done anything about it. I am so disgusted, but I am also hopeful that new energy, young proactive people who have joined together through the power of the internet, may be able to bring on some change. My friend who is 33- on a ventilator, paralyzed except for his eye balls- will venture from the nursing home he has been put in, to Capitol Hill, camera men with him, to document the hell that is going on. Then he will take the elevator to his senator's office, and type with his eyes "Help Me". I hope someone does.
    Thank You Bill, Heidi and your wonderful, beautiful children for sharing your story. Without it, we will have many more years of waiting. You will be with us every step of the way. God bless you.- Michele

  2. I can't tell you how grateful I am that all of you worked so hard on these stories. Thank you to Heidi for allowing them to be told, thank you Bill for the care you give 24/7 and thank you to those three beautiful little girls who love their mom and dad so very much.

    Heidi, I made a t-shirt to wear to DC for the conference, and I put your name on it, you will be there in spirit. Bill, all the issues that you outlined in this blog: WELL SAID. It's about time these pieces were put together in layman's terms for those outside this disease..and now it's time for the ALS Warriors to settle for nothing less, a cure for ALS.