Ultragenyx Pharmaceutical to hold up their end of contract & provide Levi his medication

Ultragenyx Pharmaceutical to hold up their end of contract & provide Levi his medication

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Chancy valentine started this petition to Ultragenyx Pharmaceutical

YOU can SAVE his life! A Parents worst nightmare! HELP!!

He was born with so many health issues. He slept most of the day. He got sick often. No doctors knew what was wrong. Not until one day when he was much older and finally got a diagnosis.

By this time, he was wheelchair bound, in the hospital most of the time and very sick. He couldn’t talk or eat by mouth. He had horrible seizures all the time.

It’s every parents worse nightmare. Everyone wants and prays for their baby to be born healthy above all else, but this baby was not.

One day, a couple years ago, they found this trial in Dallas Texas that could help him. They have done tried everything else as his life seemed to be shortening. This was their last option. The family was filled with so much hope.

They contacted the Dallas Texas doctor and he said the trial was full but he would love to see and help this little boy because he is so so rare! Once they got Levi over to this doctor he said that they have to get him in this trial. No matter what this kid was going to be in this trial. So the doctor made it happen.

This trial is for kiddos with the same illness (one of this boys many diagnosis) to try out this new medication to get it FDA approved so in the long run the pharmacy could make billions off the sale of this drug while those in the trial, the patients and Kids, would be taking all the risks.

Signing loads and loads of legal documents signing over their life to try to get help. A cure or a treatment to improve their lives. In this contact, they stated that if the medicine works for these kids, they can get it FREE for LIFE.

So all these families who were at their wits end, trying to find answers, help and full of hope signed these papers to trial this mediation and risk their kids lives. Their kids that already have loads of critical diagnosis. Chronic diagnosis.

When they finally started the trial, this little boy who could not walk, who had tons of seizures, could not eat or talk did a complete turn around. The doctors where in tears seeing how much he had improved. They couldn’t believe their eyes. This very sick child was showing signs of life. A full life walking, talking, eating by mouth and so so much more. One doctor said he went from looking like a rag doll to looking happy and healthier!

For two years Levi was on this medication. Then when the family was getting low on their supply, they called weeks in advance for it to be refilled. To their surprise, they said it cannot.

What?!?! This family has taken so many risks already with this new medicine to make this company money, signed contracts that benefited the supplier in so many ways, medicine that is fully funded and that contract that stated it would be free for life!!?!? This medicine that has given this little 7 year old boy life again!?!

His mom got to working. She called the FDA, the doctors, the company paying for the mediation and everyone. She found out who the supplier was and called them. This is incredibly shocking.

Oh and the new law trump made that says any chronically ill patient has the right to try any non FDA approved medications. It’s called the right to try act.

She called this pharmaceutical company and explained what was going on. This woman said she needed paper work from the doctors, so the mom obliged and had every doctor write it up and send it. She called the company again and they said we got all the paperwork but we will not supply it. The mom asked why and their only explanation was that they just won’t do it. The mom was furious. This company is still making this medication as they are still doing trials across the US to attempt to make billions off this medicine, yet they aren’t holding their end of the deal up. They don’t care about Levi’s life being at stake. Showed no emotion or sympathy when the mom talked to them. They did not care. They just want money! They want it FDA approved and will stop at nothing, not even little kids lives.

The medication is fully funded by another company who is still up for holding their end of the deal but this pharmaceutical company is just refusing to supply the medicines to Levi just because they don’t feel like it apparently.

Now Levi is off this medication, he is regressing. He is sleeping 20 hours a day! He is not eating enough orally. He is borderline needing his wheelchair again. He is in pain on the floor balled up and not letting his mom touch his legs bc they hurt so badly. All his health is declining back to where he was before.

There are tons of trials going on with tons of little kids risking their lives trying this medicine for this company to make all this money. What those families don’t know is how the company really is. They don’t care to help people, they just want that money.

This family is trying everything they can. This is where they need your help!!

PLEASE SHARE this with everyone! Friends, families, celebrities, doctors, the news, radio stations, political figures, everyone! Let’s get the word out how this company really is! Let’s show them how this medicine has effected Levi and that he really needs it. We need to get their attention and make them hear us!!

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Levi’s Facebook page:

https://www.facebook.com/Levistrong-184376402053289/

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The pharmaceutical company:

https://www.facebook.com/Ultragenyx/

#ultragenyx #pharmaceutical #triheptanoin #glut1deficiency

Here is the moms post copied to here if you’d like to know her words of his story.

“”So many people where wanting to know Levi's story so here it is.

On October 15, 2012 a beautiful blonde hair blue eyes cutie named Levi James Caswell entered into the world. Levi has multiple disorders. He was diagnosed with Idioipathic Epilsey, Ataxia, Glut1 Defency, Tubular Sclorsis, ALG13, Classic Stills Heart Mumor, Hyperthyroidism and RORA. Levi is 1 of 13 in the world. He was 100% wheelchair bound 100% non verbal, tube fed 24/7 and we drained his urine from a superpubic button that was placed in his bladder. We had over 100 or more seizures a day. He has almost died 4 times since he was born and we have spent a majority of his life in the hospital. We have tried everything out there with no success until we started a clinical trial using Trihipnapoid oil. The agreement when we signed up for the trial was that it would be provided for him for a lifetime (funded by the Glut1 defency foundation) if it worked for him. Well it did with much amazment to his doctors. It worked so well that the doctors said they couldn't believe that this was the same child and that they had saw him go from death to life. He started walking, he started talking, he started eating and had quality of life. He stoped having seziures and was thriving. Then came the time we were getting low on oil, so I called his Physician to let them know. They were out of oil and had no way to get more. They had me to call the Glut1 Defency Foundation. They do not supply anything other than the funding for the oil and suggested that I call every where that had clinical trials using the same oil. When I did that we learned that everywhere was no longer accepting patients or the trials were over. I then called the FDA and spoke with them regarding the situation. They put me in contact with the manufacturing company who told us they had the medication but that Levi did not have their brand of the oil and I informed her they were the ones who supplied it to his clinical trial upon which time she asked me multiple questions about other patients and what they were told and how many etc was in the trial. Which I told her I was only responsible for my son. She said that his Physician could try to get individual access for Levi but then turned around and said that they wouldn't give it to him. I asked if we could get Levi into any of their trials and was told no. But they still wanted Levi's Physician to still get his information. So I then went above everyone and started contacting anyone and everyone that I could think of.....the state representative, the govonor, the US Capital and I will continue to go as high as I need to and keep going to ensure that Levi gets what he needs. I know that there is this medication out there that can keep my son alive (because without this oil and his IVIG infusions he will die). Since not having the oil we have already seen him regressing and I refuse to let my son die knowing what can save his life is out there.””

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