Yesterday, I posted my third and final attempt at contacting Unity Point/Blank Children's via their VP and CEO. Although, I never did get an official response from they themselves, the President and COO at Blank Children's Hospital contacted me to address my concerns.
I have to be cordial in saying that he was a polite man but he advised me he was going to tell me what I didn't want to hear. I already knew that.... but I wanted to be heard. Not ignored. This is a child we are talking about.
The facts are: Unity Point/Blank Children's opposes the CBD Bill here in Iowa and will not consider backing it until the FDA Approves it.
I get it. It's big business and big pharma and there is nothing that I can do about it to change anyone's mind.
It's just sad that parents and physicians aren't able to make choices for their children and their patients without policies blocking their way. My son has suffered enough. He has been through three years of absolute hell in dealing with the medical world from the very day he was born.
It doesn't matter that they don't know how to treat his Rare Chromosome Disorder. It doesn't matter that they didn't know how to treat him when we come into the ER with collapsing spells. It doesn't matter that they put him through unneccesary IVs and starve him for hours and hours for tests that never happened due to the fact that no one wanted to call our neurologist to find out he'd just had an MRI.
It doesn't matter that he's only 3 and that we have to travel out of town and out-of-state to get the help that we need. It doesn't matter that his own Neurologist who has been seeing him since he was 10 months old won't sign an card to ensure that we won't go to jail for giving him a medicine that comes from a plant.
It doesn't matter that he's got a massive kidney and that a good portion of anti-convulsant medications are out due to the fact that they are metabolized in the kindeys. It doesn't matter that the only two medications that we have been advised are our last options can make him go backwards and lose the skills that he has worked so hard to gain.
It doesn't matter that he's had to be in multiple therapies since before he could crawl - just so he was able to sit up. It doesn't matter that at 3 he still cannot even say Mama or that he can't feed himself because his pincer grasp is just now starting to work.
It doesn't matter that the mass in his brain makes him feel pressure in his head so badly he'll slam his head into his crib for hours. It doesn't matter that the pressure from the mass in his neck that has been ignored for months has made him start hitting himself in the head and ear.
None of what my son has gone through or will go through matters to them. They will not back the CBD Bill until the FDA Approves it. Which could take decades. THESE KIDS DON'T HAVE YEARS TO WAIT.
But you know what? It doesn't matter that my kid doesn't matter to them.
It doesn't matter that they told me No. It doesn't matter that our Neurologist doesn't have the guts to do what is right. It doesn't matter that our own Physician and our own Politicians have even advised us to do it anyway.
None of that matters.
He is my son. HE MATTERS. I am going to fight to get him access to a medicine that could literally change his world. THAT IS WHAT MATTERS. KIDS MATTER. LIVES MATTER.
I have written to you (Bill Leaver and Kevin Vermeer) several times since June with no response. Julia is listed as a contact for media on the Unity Point website and I have not received a response from her either. I called and left a message for Mr. Vermeer's assistant last week and did not receive a response that way either. Incase you didn't receive them before, you can find them by scrolling past this email to the bottom as they are also included in this email.
I have shared my story with the Des Moines Register, Associated Press, the President of the Iowa Senate as well as with all of the Republican House and Senate Members. Senator Grassley's office admitted that they were aware of your hospital policy not allowing your physicians to sign off on the CBD cards, which I found shocking. I also have contacts at most of the major news outlets for television as well. I am sure Iowans would be interested in hearing that the non-profit and publicly funded hospital who touts in their commercials about how much they care for sick kids are blocking an already extremely limited bill that parents fought so hard to get.
Perhaps my last emails were too lengthy but it is difficult to share my son's story without it. I am not going to write why I think CBD is a good choice for my child. Your hospital has made it clear with its policy that you don't trust your own doctors let alone the parents of your own patients to decide what is best for their children.
So I will just share with you some facts about my child's healthcare journey. My son just turned 3 this month. In those three years he has had to fight so hard to do things that other kids and families take for granted. Two years ago, I was informed that he has a mass growing in his brain and that the mass would most likely cause seizures and that it would require surgical intervention at some point in his life.
The mass is circled in yellow below. Due to that mass, my son has to go through routine MRIs which are dangerous in so many ways to a young body. Yet, your hospital won't let us have legal access to a medicine which is anti-tumoural and anti-seizure. Instead - you would rather us put him through MRIs and multiple sedations to make sure it isn't growing. So every six to nine months we have to say goodbye to our son and pray that he wakes up from sedation and that he doesn't stop breathing during the procedure again.
In addition to the mass in his brain he also suffers a Rare Chromosome Disorder called 7q31.31 which deleted the KCND2 gene, which also pre-disposes him to Epilepsy. He is just ONE of THIRTY-FIVE people in the world who are known to have this.
We learned all of this before he turned 18 months old. However, on top of that he was also diagnosed with Hypotonia (he was unable to walk until he was 30 months old), Sensory Processing Disorder, Microganthia and more. His diagnosis list doesn't stop there but due to the fact that you have zero care in the world for what my son is going through or what my family is going through. After all, your paid Lobbyist/Employee/Manager of Child Protection at your hospital stated publicly that “We don’t know if families use it for their children that maybe four years from now they could contract cancer or something like that.”
We have seen three Neurologists and five Neurosurgeons. We have been to two Nephrologists (one who incorrectly diagnosed my son at YOUR hospital - forcing us to go to Iowa City), we have been to the CDD to meet OTs, PTs, STs, Developmental Specialists, we have put him through FOUR EEGs and FOUR MRIs and we have seen countless other specialists like Endocrinology, Orthopaedic Surgeons and Cranio-Facial Surgeons. We have been to the MN Epilepsy Group and are heading to Mayo for their diagnostic clinic in the upcoming months as well due to the fact that no one in Iowa can put the pieces together for us.
I am writing you because I think that if you even took one look at these kids and the lives that they live you would understand that they need help NOW. My son needs reprieve.
His Generalized Seizures and Abnormal Brain activity make is so that he never gets a break. Can you imagine getting shocked all day, every day and even while you are sleeping? Could you imagine how the lack of sleep would make a person feel? My son has never had a full good day. My son has never had a full night's sleep. My son has never had a summer or a spring or a winter without countless appointments and that doesn't even count his therapies. Can you imagine working for months and even years on learning words only to have them taken away by a seizure? Can you imagine how hard it is as a parent not to hear your child call you Mama?
It is heart breaking to try to share his story with people who are so against a medicine that may have the chance of changing his entire quality of life. A medicine that has been proven in other countries and other states to be effective on Epilepsy. However, my son doesn't just have Epilepsy. He also has that mass in his brain that I shared with you.
If that were your child - wouldn't you rather take the slight risk of giving him a medicine that could have the possibility of not only taking away his seizures but also shrinking that mass in his brain? A mass that all of our specialists are waiting to grow. A mass that has doubled in size since 2013. A mass that can cause life threatening and irreversible neurological damage.
If that were your son's brain - wouldn't you want to take the risk of giving him a plant in lieu of waiting for the most invasive brain surgery there is for your toddler?
If that were your son - wouldn't you appreciate the Executives at your own child's hospital taking the time to respond to your concerns?
Please sirs. Change your policy on CBD. Please help my son.
Hi! I'm Erin. I am a single mom, tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.