Times Are Tough

Well, I know it’s been a long time since my last blog post. Things have been absolutely crazy around here!! I do most of my updating on Lorelei on her Facebook page, http://www.Facebook.com/legalizeforlorelei. You can also check out and share this amazing video that my husband’s cousin made for Lorelei, https://www.youtube.com/watch?v=FHoknh1vtcI&feature=yout

Lorelei has been having a really rough time over the last few months. She is deteriorating before my eyes. I am finding it harder and harder to keep it together. I am asking for your help. Please make a donation if you can at http://www.gofundme.com/4t4ohk. We are more in need now than ever before. Lorelei requires therapies and medication that is not covered by insurance and we are drowning. Please donate and share her donation page with everyone you know. Lorelei deserves so much more than we can afford her.

As I said, Lorelei has been going down hill. Her seizures are near constant at a rate of 600+ per day. Her developmental delays are getting worse and worse, her ability to communicate verbally has become very difficult, even her physical limitations are getting more pronounced. I think what hurts the worst is that she has become completely emotionally unstable. She cries all day, becomes angry and aggressive and just seems tortured inside.

We are doing the best we can. We are trying desperately to get medical cannabis legalized here Pennsylvania. It seems not to be a priority for our legislators. I have to wonder if the shoe were on the other foot….

Until legalization is a reality, we will just continue to do what we can to help Lorelei.

Love and hugs

Letters for Lorelei

It’s time for something big!!

Please read this post all the way to the end. What I will be asking of all of you is SO SIMPLE and will literally take just two minutes of your time. I have started a campaign called “Letters for Lorelei”. I have written a letter that all of you can use to send to Pennsylvania Governor Corbett.  I am asking people from any state and any country to participate. Below is a copy of the letter. Simply copy and paste it into an email, type your name and send it to me. Easy right?! If you choose to do so, you can add your full address or just your county and state but this is not necessary if you don’t want to add it. You are also welcome to add you own comments at the bottom but I ask that you leave the current text as is.

Please take just a few minutes of your time to make a difference, not just in Lorelei’s life, but in your own or a loved one’s life. When you are done just send it to me at Lorlan107@gmail.com. Yes….I am begging🙂 Just copy the letter below and paste it into an email. Thank you all so much. Looking forward to getting lots and LOTS of emails!!

 

Dear Governor Corbett,

 

I am writing to you today to ask you to please pass Senate Bill 1182.  A very special six-year-old Pennsylvania girl, Lorelei Ulrich, is suffering from epilepsy that is not responding to medication.  Lorelei started having seizures at 22 months old.  Now, at six years old, she has tried and failed over a dozen pharmaceutical medications in various combinations and the ketogenic diet.  Today, Lorelei is having several hundred seizures every day.

One treatment that Lorelei has not yet been able to trial is a very specific type of medical cannabis containing a high concentration of a cannabinoid called cannabidiol (CBD).  Strains of cannabis that contain a high concentration of CBD have been proven to be an effective treatment for medication resistant epilepsy.  In fact, in states with progressive cannabis programs like Colorado and California, children with refractory epilepsy, like Lorelei, when provided with a consistent dose of high concentration CBD cannabis, are often able to stop taking their pharmaceutical anti-epileptic drugs completely. Particularly noteworthy about CBD is that, unlike the cannabinoid THC, it is non psycho active, so there is no “high.”  The plant is made into an edible form, like a tincture, which is administered to the patient orally via syringe, or added to food, just like a pharmaceutical medication.

Lorelei is in dire need of an effective treatment for her seizures.  Each day she is slipping further and further away from her family.  Cannabis could be the miracle they have been searching for.  To help Lorelei and thousands of other Pennsylvania residents gain safe access to the medicine they so desperately need, please support Senate Bill 1182 and the legalization of medical cannabis which is strongly supported by the people of Pennsylvania who elected you as Governor. Lorelei’s life depends on you.

 

Sincerely,

Winds of Change

Our story aired on Fox 29 out of Philadelphia! They said a great job with it. It does kind of elude to us using the cannabis oil now. Unfortunately, we aren’t. We are working on new legislation here in Pa and we are waiting for it to become legal before we try it. There is too much to risk.

At the rally we are hosting on Monday in Harrisburg, new legislature will be announced. For the first time in Pa, it will be bipartisan! I feel change coming. If you are in the area, please come out to the rally and show your support for the legalization for medical cannabis in Pa!!

If you haven’t done so yet, “Like” Lorelei’s Facebook page at WWW.Facebook.com/legalizeforlorelei and make sure to sign our petition here on our website. Thanks all!!

Love and hugs❤

Link:
http://www.myfoxphilly.com/video?clienttype=generic&smartdevicecgbypass

Check Out Our Facebook Page!!

I’m sorry it has been so long since I have blogged. So much has been going on and I mostly keep us with everything through Lorelei’s Facebook page. I will still blog here occasionally when big things happen. If you want to see what’s happening on a day to day basis, head over to WWW.Facebook.com/legalizeforlorelei and “like” our page. I post there frequently.

I will continue to post new content here as far as information and our media coverage so be sure to check in to see what’s new.

Thank you all for your support.

Love and hugs,

Dana

Going Global and Making Strides

Hey there everyone! I was so happy to see, when I checked the website’s stats last night, that we have people coming to check us out from all over the world.

Lorelei’s story is one that I think most can relate to in some way or another. Some have a parent that they are losing to Alzheimer’s, some have a lifelong friend that has cancer, Some have a child who has come home from war with PTSD, some are fighting a battle themselves. From cancer to chronic pain, to MS, and everywhere in between, people all over can find relief from medical cannabis. Just want to say thanks to all of Lorelei’s supporters out there, all over the world

On another amazing note, Lorelei’s story has won the heart of republican State Representative Jim Cox of the 129th division here in Pa. Jim Cox is now the FIRST republican to ever co-sponsor a marijuana bill in our state!! He has officially co-sponsored House Bill 1181, proposing legalization of medical cannabis. Kudos to him for standing up for what’s right even when its hard to do. My family will forever be grateful to him. If you are a Pa resident, please call his office, write a letter, send a basket, whatever we can do to show our appreciation for his selfless act. He is most likely going to get some flack for this so let show him some love. Below is his address and phone number as well as a link to his Facebook page, where you can also leave a thank you message.

Representative Jim Cox
2909 Windmill Rd
Suite 7
Sinking Spring, PA 19608
(610) 670-0139

WWW.Facebook.com/repjimcox

Well, Hello There

Good morning and welcome to all our newcomers!! The support we’ve been shown is amazing!! We are so grateful and feel humbled knowing so many support Lorelei and our fight for medical cannabis. So many are asking how they can help. Its easy, really.

Please sign the petitions. There are links on this page to both of them. After you sign, please share them with absolutely everyone you can. There IS power in numbers!!

Next, you can call your local state reps and senators. If you don’t know who they are, here is a link to find them: http://www.legis.state.pa.us. Just search by your address in the top right corner of the page. Call and tell them you support medical cannabis in Pa. If you can manage a face to face meeting, that’s even better. This is vital in getting medical cannabis passed.

“Like” Lorelei’s page on Facebook to stay up to date with everything that’s going on. Events, like our rally on Nov.18th at the capitol, will be posted there. WWW.Facebook.com/legalizeforlorelei  Invite your friends to like it too!! Share away🙂

Lastly, and I must say this is very hard for me to ask…I am a very proud person. Please donate if you can. If you can’t, please share the donation page around. There are things that we simply cannot afford for Lorelei like certain meds that aren’t covered by insurance, services, devices, etc. All of the money raised will go to Lorelei’s care.
http://www.gofundme.com/4t4ohk

Thank you all again for so much love and support. I wish I could hug each and every one of you. (((((((Cyber hug))))))))

Big Day for Media

Wow!! We made front page/top story with Lancaster Newspaper this morning!! I feel so grateful that we are able to get our message out there on such an enormous platform. The article was great and I’m glad they were able to convey that these children would not be smoking or getting high. Here is the link to the story: http://lancasteronline.com/article/local/911113_Mother-of-daughter-with-epilepsy-…makes-case-for-medical-marijuana.html
My LadyBud article also came out at around midnight! They did an amazing job with it. We are lucky to have such a great outlet like LadyBud to tell our story through. The women there are fantastic!  The link to that is here:  http://www.ladybud.com/2013/10/28/mothers-in-pennsylvania-unite-and-fight-for-medical-cannabis/
The Fox 29 story has not aired yet today. My guess is that they’ll run it on their evening news. When I have a link for that, I’ll post it.
We are feeling very fortunate this morning. It’s an amazing feeling to know that so many are landing on our side. People are seeing the benefits and opening their minds to change and for that we are grateful. What a wonderful day.  Hope everyone has an awesome day!!
Love and hugs to all of our supporters